>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.
>So, Elsie’s really flaring. For those who have not followed this saga, Elsie Penelope is my 13-year-old cat who was diagnosed with inflammatory bowel disease a few years ago. The vet informed my mom and I that basically, she would flare periodically, and each time it would be worse until one time she would starve. So. Not much to look foward to.
I thought it was it two flares ago. She stopped eating and drinking for 3 days. We took her to the ER, and they gave her Pepcid and fluids and sent her home. The vet switched her from prednisone injections to oral steroid medication. We also switched her to super-high-quality, organic, chicken-free, gluten-free, corn-free food (it’s made of green pea and duck, in case you wonder what’s left to feed a cat). She got better.
I really thought the last time was it (October 2010). She began to throw up everything she ate. Everything. At some point, testing different foods, I found out that dry food caused her to throw up, while her wet food did not. Easy (though expensive) switch. Also, we temporarily increased her prednisone from 0.3 mL/every other day to 0.5 mL/day. Again, she got better.
Until Thursday. I came home to what looked a human had done in terms of vomiting. Well, quantity, anyway. There were about 50 separate little puddles, ALL over my living room carpet. Clean up? Oh, so over that. No big deal. In fact, I left the throw up, tip-toed around it, and held my kitty. She threw up again Friday, though not as much. I didn’t feed her this morning, and she still threw up. She also has diarrhea, and she is hardly drinking. Oh, and she keeps getting vomit on herself and is too exhausted to get it off, and I don’t have the heart to put her through a wet rag, so icky she will be. I love her and kiss her anyway.
Basically, at this point, all the stops are pulled out. Back up on the prednisone. Giving her Pepcid AC at home (not an easy cat to pill). Got some CatSip (unfortified milk with lactase added so that cats can digest it). Feeding her this every hour and will continue to do that all night, all day, until she can eat again. Tomorrow, we will get the dollar-an-once CatSure, a milkshake designed for older cats who can’t or won’t eat. All I can say is, at that price, let’s just hope and pray that it’s successful. The CatSip is good for being something, anything she can take in, but it’s not fortified and is therefore not meant as a long-term supplement.
Miss Never-Leaves-My-Side; Miss I’ll Just Sit Here and Stare At You, Mom; Miss Squeak… is hiding under the doll cradle. She’s lost over a pound in 2 days. I’m so thankful for the purposeful extra half-pound I put on her in the past month or two in preparation for the next time this happened. I will take a barely-chubby cat most of the time rather than a deathly thin one occasionally.
But even in all of this, she never stops. Never. The other night, I was having a major melt down, and when I called my mom, she told me to get a shower. I resisted but finally complied. However, I continued to bawl my eyes out in the shower. Elsie came into the bathroom (she usually waits and meows some while I’m in the shower) and began to cry, cry, cry. When I opened the curtain, she quite literally tried to climb into the shower with me, she was so concerned. I used a wet hand to guide her back out. You know how cats are with water, right? Elsie’s no different… unless her mama is upset, apparently.
Since I’ve started writing this she’s thrown up another 4 or 5 times. I’m guessing a total of two or three ounces of CatSip have stayed down. When she throws up, I know it hurts her, because she lets out these long, horrible meows, and her eyes get huge. I just so wish it could be me.
Please, God, not my baby. Not yet.
>This is so big; I don’t know that I have the words inside me to get it out. To warm myself up, to get the words started, I’m going to tell you that I came home to an apartment floor just covered in kitty throw up. Elsie seems to be flaring, and that scares me. So, please, please pray for my cat.
So, onto bigger things, I guess. I read a lot online (and offline, in books). I read from so many parents, and it’s interesting to see how parents look at their autistic children. There are two major camps that I see. The parent in camp A would say, “My son is NOT his autism. Somebody fix him. Somebody free him, please.” They are angry at autism, they want it to go away. Parents in camp B would say, “My child is an incredible blessing of a person. People need to learn to accept him, because he has so very much to give.” Some parents pull from both camps, and I’m sure some think something else entirely, but those are the two predominant viewpoints that I’ve experienced.
I want you to consider camp B for a moment. Have you ever noticed that, by the time children with autism turn into adults with autism, no one is saying how beautiful, hard-working, incredible, honest, pretense-less they are? The words I hear describing me are more like difficult, impossible, a behavioral challenge, “severe behaviors,” frustrating, exhausting. This is from family, friends, and staff. My BSS couldn’t believe that I, a (her words!) “pretty, intelligent, friendly” girl, would have horribly low self esteem. I didn’t say anything, because my words failed me. But I can write it… are you kidding? How could I have anything but low self esteem? Look at the words that are used to describe me on a daily basis. When that is what you hear day in and day out, what do you think I’m going to see in myself?
A problem that seems to keep cropping up with people who know me, even those who know me very well, is that they want to be friends with me until I… get autistic on them. Until I misinterpret them and think they’re frustrated with me when they’re not. Until I melt down in public. Until I can’t work, can’t go anywhere alone without panicking, until I communicate something very poorly. Then, they get angry with me, and their words can be harsh, and it’s very upsetting. It ends friendships… many.
My therapist pointed out that I’m a bit of a paradox in that I simultaneously do not much care what others think of me while also caring so, so deeply that they like me. And when a good friend rejects me based on “the way I am,” when it’s just too much for her, it makes me want to stop being myself around anyone.
I wish people could accept some of the pardoxes in me. That I am at the same time highly intelligent and have no common sense. That I can write a book but can’t interpret almost any nonverbal signals. That I can think on my feet but not speak on my feet.
This is my autism.
My autism is being too honest and hurting feelings.
Having so many words but limited ability to express myself, some times more than others.
Seeing the world, and people, in black and white.
Not understanding pretense and getting upset with people who use it overtly.
Having ridiculous anxiety, especially in social situations.
Needing, needing to hear about my cat, even when you’re soooo tired of telling me about her.
Having immense changes in abilities from day to day.
And therefore never knowing what to tell you to expect (but, please, don’t ever tell me I’m faking it.)
Being basically unable to successfully talk on the phone. Someone always ends up angry or frustrated or confused. Usually me.
Being furiously stuck on rules, whether my own or those imposed upon me.
Melting down, regardless of where I am.
Rocking, banging, hitting, flapping…
Misinterpreting everything… with a tendency to assume that no on likes me and therefore everyone must be angry with me.
Never “learning my lesson.” In other words, I do not generalize well and need to be taught and retaught even if the situation is very similar to one I’ve already been taught.
This is my autism. Is it hard? Yes. I know it’s hard. It’s hard for me too!
But, at least to one person in this world, I like to think that maybe I’m worth it, not just despite, but in part because of it all…
>So, third time in two weeks: I forgot my morning meds.
Someone just slap me, would you? This is just… not okay. I can’t keep doing this.
As one would expect, the morning started off alright. I mean, the bus took 2 hours to get me to partial almost, but that’s not that unusual.
As the day progressed, I could literally feel the anxiety under my skin. I was itchy and crawly and antsy. Finally around 2pm, the nurse (who was leading group) said, “Lydia, did you take your meds today?”
I was like, okay, I’m still alright, and I can take them as soon as I get home.
But then… well, then, the bus didn’t show up after a half hour. So I called. They told me he was 5 minutes way. Another half hour later (all of this time spent outside in the rain and cold), he still wasn’t there.
He finally pulled up. “You’re gonna have to squeeze on.” What? I look over. He put a man in a wheelchair in the front of the bus, blocking the rest of the seats. I had no way to get on the bus but to squeeze past the gentleman in the chair. The man’s arms were all bandaged, and while I highly, highly doubted I was going to fit through the 4 or 5-inch space, I knew that I wasn’t going to try, as the one side of the space was created by the man’s elbows. I could have easily hurt him, and I was not going to.
“Either get on, or get off and wait for another bus. Those are your options.”
“I’m sorry, but there’s no way I can fit through that space.”
“That’s great, but I know I can’t. Nevermind. I’ll get another ride.”
So he sits and stares at me for 5 minutes while I call my mom, bawling. In retrospect and after Mom brought it to my attention, I should have told the driver that he needed to reposition the man in the chair in the back of the bus (like they did this morning). Or move the chair so I could get on, then put it back. But I didn’t think of any of that. I was miserable due to the lack of meds, and I’d been outside for over an hour, and I had to be home for a 5:30 BSS meeting.
While I waited for Mom, I melted, and went in and found my therapist who helped me to calm down and think a little and push my BSS time back a little bit.
In the end, Mom saved the day and came and got me and brought me home. She will be on the phones tomorrow regarding the ignorant driver.
I came home and did Operation Calm Down. I held Elsie, played laser light and made her dizzy, put on Food Network, lit my lavander candle, and inhaled 3 bottles of Glucerna for dinner. Oh, and I took my meds, plus a couple of klonopin for immediate effect.
I know most people would see the meltdown and think of how I need to improve, but honestly, I’m surprised with how well I handled the situation. Well, except when I whacked Mom for trying to touch me… but that was out of my control. But seriously, I found my therapist, and there was no self injury, and I was breathing deeply the whole time. …better?