>In my women’s bible study, I’m in a class based on a book called S.H.A.P.E. by Erik Rees. It’s about discovering your spiritual gifts, heart, abilities, personality, and experiences; putting them into a put and mixing them around to come up with your “shape;” then using that shape to fulfill your Kingdom Purpose. I missed the first maybe 8 week sof the study due to my hospitalization then time in partial, but I’ve been back for a couple or three weeks now. Today, we talked about the movie Chariots of Fire (while I am not old enough to remember this movie, clips of it were shown at various presentations throughout my 4 years at a Christian college). We talked about the statement that Eric Liddell makes- “God made me fast, and when I run, I feel His pleasure.” Pastor Betsy asked us how we would fill in those blanks. I said, “God made me see the world uniquely, and when I write, I feel His pleasure.” What I really meant is that God made me with autism, but I was too shy to say that in front of a room full of people, so I more carefully worded it. My point remained, however. As we were talking about this concept, this statement, one of the things Betsy brought up from the book was the concept of a sweet spot. In case you don’t know, a sweet spot is the spot on a bat or racquet where, when the ball makes contact, it goes the maximum distance with the minimum amount of effort. Applied to our lives, the sweet spot is then the place we fit in where we get the maximum effectiveness with the minimum amount of effort. Make sense? Well, this is where things begin to get sticky, and I begin to get stuck. I’m not sure what my sweet spot is outside of my typing. As I see it, I make the greatest amount of impact through my blog, message boards, emails, and they require little to no effort. But is that… real, I guess? I know it’s not right for me to compare myself to other people. That’s a very dangerous game. I suppose the more helpful way to think of it is that there was a hole in the autism community that my blog and book and writing was able to fill. It made me think that I could live in my sweet spot more often. Why do I force words out when if I just waited until I got home, I could type them? If I get SSI (hearing June 17th, in case you were wondering) my big purchase with the back pay will be an iPad or iPod touch (haven’t decided which yet, leaning toward the iPad though) so that I have portable typing if needed. I mean, yeah, a lot of times I’m able to force through it and talk, but why? It’s really uncomfortable. Sometimes it even makes me sick. I do it to seem more normal, I suppose, but is that really the goal? And at what cost? And what about cats? I love cats. Okay, so I can’t really be more involved with cats than I already am, but they sure are part of my sweet spot. Can I say it again? I do love cats. And my dolls! Oh, do I ever love to sew for them. If I thought anyone cared, I would post pictures of them in some of their outfits that I’ve made, but I don’t think anyone will be interested so I haven’t so far. I get so much enjoyment out of my 3 dolls and their clothes and their accessories. I have babysitting money to spend on new things to sew this weekend, and I can’t wait! The most recent addition to Lissie and Zoey’s wardrobe is jeans… Lissie’s came out more like jeggings or skinny jeans, so I made Zoey’s bigger and they fit well. So do Lissie’s, I guess, once they’re on… which isn’t an easy task. I could continue, but instead I’ll encourage you to think about your sweet spot. You were created with specific gifts, talents, and passions. How can you best use them?
>Editor’s note: I can’t get the spacing to cooperate… I’ll mess with it again later and see if it works. Sorry it’s obnoxious to the eyes… just bear with me! I’m trying to think of a decision I’ve made in my life that is bigger than this one. It seems like anything that compares in enormity was a decision that was made for me or one that was so obvious that it didn’t involve any thought. An example of this is where I wanted to go to college… there was one school, and only one, that interested me. It was rather difficult to get into, but if I didn’t get in, I would reapply each semester until I did. Thankfully, this turned out not to be an issue. Anyway, the Big Decision is whether my next animal will be a cat or a dog. The one I choose will be my best friend for the next 10-15 years. What’s the difference? you might ask. Well, let me tell you! I am strictly a cat person. I love cats. I am obsessed with them. I am more than obsessed with them. Cats are my reason for living, quite literally, sometimes. Don’t want to eat? Have to, because my kitty needs me. Don’t want to get help? Have to be healthy, because that cat depends on me. I need, need, need cats. But then… a dog, if I got one, would be a service dog. He or she (I hope she) would go everywhere with me. She would not be pet but rather a friend in fur, kind of like Elsie is now. I could depend on her and she would keep me from panicking when I go out. She could really, really change my life. Could I learn to love a dog (note, I do not need to learn to love dogs in general, just my own, one dog) as I love Elsie? Is that possible for me? This is a very hard decision.
>Speaking of Elsie… my new BSS called the other night and we talked for a while. She seemed nice and everything, but right at the end when I mentioned Elsie, she said, “Oh, can it go away when I come? I’m allergic and I will sneeze.”
Though we’ve known each other for 23 years now, it’s only been 27 months since I came to know your name. I now know that you have been the cause of many highs in my life. You were there when I attained a class rank of 1 out of almost 500 students. You were there when I, a novice, self-taught violin player, made it to the district orchestra and played original Tchaikovsky. You were there when I won the city’s story writing contest, beating out writers nearly twice my age. But, autism, you were also the cause of some of the deepest, darkest times. You are much of the reason that I have lost nearly every friend I’ve ever had. You’re close by when I have lost my words but am filled with emotion and a need to express myself. You’ve caused me to be called so many names… weird, freak, even the r-word that I won’t type. You and I have had a love-hate relationship for as long as we’ve been together.
My feelings about you change from day to day, hour to hour. Sometimes I am grateful for the ways in which you’ve made me a unique individual. Sometimes I like that I see the world through a different set of lenses and have a different perspective on life. I love the way you’ve kept me young at heart when it seems that everyone else has grown up and, in my cases, become twisted or tainted. Goodness knows I’m thankful for the cats! It’s not all flowers and butterflies, though; you’ve hurt me, badly. I hate that people look at me like I’m different. I hate it when people tell me I’m too difficult, too confusing, too weird, too much, too challening. It upsets me when I have so much to say but simply can’t get the words out. I’m resentful of the way you keep me out of public places because they’re simply overwhelming. You’ve kept me from normalcy, that thing that I desire above all else.
I wish that we could live more in harmony with one another. To be honest, I’ve struggled with you for so long, I’m not even sure what that would be like. I could do without the frequent melt downs, thank you, and I would love to fit into the small group at church that I “should” fit into, rather than not fitting into one at all. I wish that people could learn that what I am on my best day and what I am on my worst day is all one person. I wish that I could learn to let myself be… myself… in every situation, rather than forcing what I don’t feel.
Don’t you see how great it would be if things could change, just a little? If I could go out in public to do what I need, and even want, to do? If the melt downs calmed down a little? If all the comorbids simply fell away… or, more realistically, if I could work at them until I beat them? The anxiety, the OCD… all of it, gone. If people were more understanding and accepting? If I could just be me? If I had the words I needed, when I needed them, reliably? If I didn’t have to talk when it literally makes me sick to do it? If we got rid of the hitting, biting, picking, rocking? Life would be better if we weren’t so at odds. I could have freedom, and you could be a success story… how autism helped one girl “make it.”
I know you’re hesitant to change– heck, you’re in part defined by a love of routine. But you know, autism, look at all the good that has come into our lives because of change. We were terrified to move out and come to this apartment, but that has turned out to be fantastic. And going to college (then coming home on breaks, then going back, then graduating)… every single one of those changes was a challenge, but look how much we learned in college and how much better able we are to use our mind for it. And adjusting to partial was certainly hard, but that has been a huge, huge blessing. Change isn’t all bad.
I’m so confident that we’re going to be okay. I truly do need you, or I wouldn’t be who2re for backup. There’s Elsie, who means the world to us and loves us totally unconditionally. There’s L and T and K and C who provide Waiver services, ABA and community inclusion and all that jazz, who are helping us. There’s Jannette and Dana and Dana (yes, both of them, too) who want to see us get better. There are our friends, Leigh and Chloe and Heather, who are here for us no matter what. These people will help us. They won’t give up on us.
So, what do you say, autism? Can we give it a shot? There’s a big world out there waiting for us, and it’s time to find out what it has in store!
>I’m in an awkward position (what else is new?). I need to write. No. I REALLY need to write. It’s in there. It needs to come out. So what’s the problem?
Well, for once in my life, I don’t know what to write about!
So… I’m going to write about one of my obsessions… the English language, or more specifically, spelling and grammar. Oh, come on. Maybe you’ll learn something!
Lesson 1: Your and you’re.
YOUR is a possessive pronoun. Your backpack, your idea, yourself.
YOU’RE is a contraction of YOU and ARE. It is most frequently used as a verb. YOU’RE impossible. YOU’RE autistic. YOU’RE mine.
And, YOU’RE welcome. Think for a second. If you were to say “your welcome,” as most people write, you’re saying that the welcome belongs to somebody. It is your welcome. What you really mean is YOU ARE welcome, correct? So. You’re welcome. Got it?
Lesson 2: Its and it’s
ITS is the gender-neutral possessive pronoun, so it implies belonging of some sort. ITS table. ITS book. ITS hair.
IT’S is a contraction of IT IS or IT HAS. IT’S not fair. IT’S okay. IT’S been nice.
Lesson 3: Maybe and may be
MAYBE is an adverb, so it answers the question “to what extent?” in a way. MAYBE we’ll go to the movies. MAYBE you’re wrong. MAYBE I did say that.
MAY BE is a verb phrase. It MAY BE okay. It MAY BE that we’ll go to the movies. You MAY BE coming with us.
This rule generally holds true for other words that can be compound words versus two words, too. SOME TIMES and SOMETIMES. EVERYDAY and EVERY DAY.
Okay, I’ll stop, because if you made it through that, I’m impressed. I can think of a million more things to teach you, but those are the ones that stand out in my mind right now and mistakes that I frequently see.
If you ever have a grammar question, you know who to ask ;)
>A post is swimming in my mind; it’s in the hazy, nebulous beginnings of what it will soon become (at least, I hope it will). Soon, I hope that I will start getting phrases and bits and pieces of what it will say. Right now, it’s just an idea. But, when it comes together, you’ll know.
I just wanted to tell you (because so many of you have expressed care and concern, and we appreciate that very much) that Elsie is doing really, really well. She’s on a normal eating schedule as of this morning, hasn’t thrown up since Friday night, and is back to her little twerpy things that she does. The things that drove me nuts (typing on the keyboard, crying while I’m in the shower until I get out, begging to go into the storage closet so she can chew on the Christmas tree), I’m suddenly seeing in a new light and finding cute and funny.
Thank you, thank you to all of you who have told me what a good cat mom I am. That is truly the highest compliment anyone could give me. Elsie means so very much to me, and I strive to care for her as well as can be done. If you’ll allow me to digress a tad, I will say that when I compliment other people, I compliment them on their cats. “Your cat is pretty” is one of the best compliments I can think of. Leigh recently told me that, well, not everyone sees that as a compliment. Try complimenting people on their clothes or their personality traits that I admire. So, I’m trying, but it all sounds a bit silly to me. I don’t want to be complimented on those things; I want someone to tell me something good about my cat. So, to tell me that I am a good cat mom is the highest praise.
>A new day dawned at 4AM this morning… before the sun was even out. Elsie had woken me up at 12, 2, and then 4 for milk. As of 4, even after I fed her, she wanted me up and moving, and I was kind of up anyway, so… up I got.
It was a long, long morning. I was desperately awaitng 9:30 when I could call the city’s cat clinic with the cat specialist and see if they could see her. I did everything I could think of to entertain myself and talked to Els a lot.
9:30 came and the line was busy. At 9:34, I got through. The woman who picked up the phone said that Elsie needed to go to the city’s best animal hospital ER, because she needed fluids and tests. It would run over a thousand dollars, and they don’t do payment plans. But, it was our only option.
My mom and I had “the talk,” in which she told me that euthanasia was possibly on the table, and while obviously I wasn’t happy, I also knew that it’s not time; not yet. My mom said to let her think and that when she got to my house, we’d talk.
My mom came over around 11. She remembered from when my aunt’s friend’s cat was old and sick the name of a doctor (Dr. Tarter), a deeply Southern guy who works at Petsmart at the Banfield Animal Hospital. My aunt’s friend liked him because he cared well for the cats but worked within financial constraints, and if something was too expensive, did not try to guilt you into doing it (like our current vet does). I called, and they said to bring her right over, that they had an appointment at noon.
Elsie hates car rides, and she was mighty restless the whole time. We got her to the clinic and filled out paperwork. They called her back and noted that she was dehydrated and had lost weight. The doctor came in and talked to her and pet her for a bit before he tried to pull her out of her carrier. Every time someone pulled her out, she tried to run back in, which she never does… she really must be feeling sick.
Basically, the doctor said that there’s no way to know if it’s truly IBD without extensive testing (which I cannot afford). Even then, he needs her records to tell if her history is consistent with IBD. He said that IBD is often manageable without steroids (which she’s been on for over a year on varying doses), and that when she gets through this flare, depending on her records, he might see about daily Pepto Bismal (yep, the pink stuff) instead.
He said that if she’ll drink cat milk, that for the short term, give her that. I also bought a super, super high calorie paste (as in, 2-4 teaspoons provides a day’s worth of calories) to mix into the milk, and she’s taking sips of it. He prescribed a special, easily digestable, high calorie cat food only available by prescription. Cats love it and digest it well, so it should be good.
He gave her Pepto, an injection so that she won’t vomit for 24 hours, and fluids in the back of her neck. She has a bubble now. We bought Pepto to give her at home, too.
We came home, prepared some calorie paste/cat milk, and went to run errands. I finally got a break because she had the fluids, so I didn’t need to give them to her every hour. When I got home a bit ago, she was miserable and wobbly and just plain weird. Then, I realized about that nausea shot they gave her- that’s what happens to me when I get a shot for vomiting! I called the clinic and they said it can definitely do that, and they’ll call back tomorrow and if she’s not better I can bring her in.
So, we’re still counting tiny cat-sized sips of nutrition/fluid instead of ounces like I wish we would be, but he says that she should pull through. We brought her in before she got critical, which was definitely good.
Keep praying? We need it. Pray that I know what to feed her when, that I don’t get exhausted, that her poor little belly heals. Pray that she’s not in pain. Pray that I have self control, because if I get excited and feed her too much too quickly, she’ll start throwing up again. Gotta go slow.
One step at a time.