Arranger of sounds.
Syllables run freely.
The keys speak, confirming a notion expressed.
Once only a thought, now let free.
Author of songs.
Sung note by note.
Songs breaking through silence.
In monochrome.
Artist of freedom.
Effortless strokes of the keys.
Awareness so hoped for.
They’re words that she weaves.
If I knew what to say, I’d tell you a million little things that I’ve acquired in my brain over the weeks and months and lifetime.
If I could, I’d tell you that I’m so over age appropriateness. You say Disney and American Girl isn’t age appropriate for me? Well, excuse my language, but I say you can shove it. I would, if I could, ask you what the point of encouraging age appropriate interests is. Is it to make friends? I have many, even more than I can keep track of sometimes. Is it so that people will like me? Hate to break it to you, but people already do like me (not everyone, but, well, obviously, right?). Is it so that I can be normal? And to what end, I would ask? If I’m comfortable with it, you should be comfortable with it, and that’s that.
And if I could, I would say that that I’m so over normalcy. Ask Chloe what “normal” means… she’ll tell you that it’s “just a setting on the washing machine.” I would argue that “normal” is of no value outside of its statistical meaning, which is the mean or standard deviation of 0. If “normal” means chasing down boys, going to bars, and trying to “get ahead”… all the while being unable to articulate your personal beliefs, values, and sense of self… well then, I rest my case, I would tell you.
If I could, I’d tell you that the peace that silence brings me is like a starry night and an open field. It’s huge, it’s wondrous, it’s freeing. I’d tell you that speech is harsh, cold, and metallic. There is beauty in silence. Rather than run from it, try embracing it.
If I could, I’d tell you that I’m still stuck on some aspects of theory of mind. I simply cannot grasp that other humans have brains like mine that think thoughts like mine (this, coming from the girl who literally authors blog posts while she sleeps and dreams of typing). I can’t grasp that people can think while other humans are present. I ask, again, how does the world not explode? I also get myself entirely confused when trying to figure out the essential aspects of a story which I must relay to another person in order for them to understand me. I say too much or I say too little, but rarely do I get it just right.
And if I could… oh, I’d tell you. I’d tell you that sometimes I feel like I ought to be doing a much better job of telling you what it’s like on the inside, so to speak. I’d tell you that I have no direction, no idea where my writing is going, just that I need to write. I’d tell you that sometimes I think that a more interesting, more relatable, or even a more autistic person ought to be writing, and not me. I worry… I’d tell you.
I’d tell you… forgive the analogy, but something (I can’t seem to quite get what that something is) is like a woman in labor, here. Whether it’s a revelation, a relationship, I do not know, but something is on the horizon. I can feel it.
I’d ask you how people are meant to sleep at night when the world is in such pain. Perhaps I don’t show much empathy, but I literally lose sleep over hunger, pain, death… of people who have no faces and no names, of animals, of life itself.
And, I do apologize, but I would implore you… I would say, “Educate!” Tell just one person today something, anything about autism. Shatter a stereotype. There’s a whole world out there, and it’s ours for the taking, but we have to get past our shyness and educate. My place is at my keyboard, and I thank God that I have found these keys and taught these fingers; where is your place?
I would tell, I would ask… I would even implore… but there are just no words, or none good enough. But then, words are all we have.
I was up half the night. Darn that autism-related insomnia that comes when you least expect it, eh? I’ve been sleeping well (okay, so it takes nearly a handful of sedative meds, included 5 mg of melatonin, for that to happen) for a few months now. Until last night. I’m worried, really worried about something, and I can’t type about it yet. It’s not time. So, it my head it will sit and fester, and I will worry.
I didn’t sleep well once I was asleep, either. Between the strangest dreams and the cat biting my hair and pulling, well, there was a lot of restlessness.
One of my dreams scared me, badly. In it, I was trying to type, only, I couldn’t, really. I would get the wrong words, I would get lots of letters in amongst the ones I was trying to type, and sometimes, despite hitting the keys correctly, I would get no letters at all. Basically, typing became like speaking is. Sometimes, when I speak, I don’t say what I mean to say, sometimes, I get bits of echolalia peppered within my speech, and other times, I get nothing at all. Scary, right? No typing? Yes. Scary.
Starting at about 9 or 9:30 AM, Elsie was biting me like crazy. I got up, and she had food, so I armed myself with the squirt bottle and laid back down. Except, even the squirt bottle was no deterrant. She simply would not leave me alone. At 11:30, a dozen or more bites later… I realized I was low. Not just low, but in the 40s. This means that I’d been low for quite a long time. Darn that cat, but I swear she knew. It’s not the first time this has happened. Thankless job, isn’t it? Getting shoved and squirted? I made sure to give her a kiss just now.
I want to point something out, and I hope I’m not uh… shoot, I don’t know the figure of speech for that one. Being a pain, I suppose. If you look at the right-hand side bar of my blog, you’ll see some new things. Brother made the “email me” link live. Then, he fixed the link to my book. Finally, he added a button (see it?) for GiveForward, where I’m going to attempt to raise money to bring Lexie Mae home. I worry about asking for help. I don’t want to ask for what isn’t mine, you know? But think about it, spread the word, pass it on, what have you. I’d really appreciate it.
I have some pretty awesome friends in this autism world of ours. Now, I wish I could take a day and write about how cool each and every one of them really is, but, well, we’d be here forever. And that, like many things that are seemingly insignificant, is huge for this autistic girl. You see, I don’t do so well with friendships. I’m not even sure why that is, and I’m not so sure if I do the same (wrong) things online or not. But at least among all you ASD moms and kids, I have found community, and that’s just awesome.
So anyway, back to my point, my friend MO’N over at Full Soul Ahead, is one awesome autism mama. Now, we have different perspectives on a lot of things, but my respect for her as a mom who is raising incredible kids, as a special needs parent, as a woman, or heck, just as another human, is huge.
One of the things Michelle has taught me is about rampages of appreciation. I just had a spur-of-the-moment one in a chat with Mrs. E, and I thought I’d continue it here for you, too, to read. I know I complain a lot, so hey, how about a change of pace?
Not to rehash where we’ve already been, but my friends are too cool. I may not have “typical” friendships, being that I haven’t met all but two of the people I call friends, but I have found people who accept and appreciate me for who I am, and I for who they are. We come far from agreeing on everything about faith, life, and ASD, but I know these people have my back.
I know this is old news, but I can never miss an opportunity to gush about my cat. She’s been getting fur up my nose all evening as she asks for food by shoving her cat (as opposed to her person) in my face. Silly cat. I love her.
I’m getting a service dog. Did you hear that? Me! A service dog! My trainers are really neat, talented, caring people, totally a pleasure to work with.
I have staff. I know staff and I have our differences, but really, the fact that I have staff at all is celebratory, as so many people in so many parts of the world do not. I am grateful for my staff.
I have communication at (almost) all times. I know that I can’t always speak, but I do not feel like I am at any sort of disadvantage because I can type, and that is a very good thing. I have my iPod which goes everywhere with me, and I never need to worry now that I will be out and lose speech and won’t have a way to communicate.
I never do without. I know I live on very little money, but things always, always work out (this is mostly via a vehicle known as Mom…). I can eat GFCF, I got a third pair of summer shoes last week, and I even have four (count them- FOUR!) American Girl dolls now (a friend who I shall leave anonymous made it possible for me to get Addy!). I have the big things, clothes and shoes, and the little things, like dry-erase paint to turn my wall into a white board (Sister went on the Martha Stewart show and got it).
Also thanks to Sister and Brother, as of Monday I will be hooked up with a wireless router! Words With Friends, here I come, at my leisure as opposed to just one day a week at Mom’s!
I saw sensory-friendly Harry Potter and the Deathly Hallows Part 2 today and only had to wear earplugs for about half the movie. My ears were happy.
I need to remember to do that every so often. It feels good.
Sometimes you feel like a duck; sometimes you don’t.
- Me, attempting to make a point to staff the other day… almost, right?
This is one of those roll out of couch (because I sleep on the couch and not in my bed), don’t even put my glasses on, wake up the computer and write, posts.
Yesterday, I watched Wretches and Jabberers with staff. For anyone who doesn’t know, it’s a documentary about two men wih autism who do not speak much but type quite a bit. It’s about advocacy, it’s about making friends, and it’s about changing lives. I loved every minute.
But it’s left me thinking, if jabberers are people who speak and wretches are people who don’t speak but type, what am I?
Sometimes you feel like a duck, sometimes you don’t… right?
Today was such a good speech day. I didn’t have words until about 3PM, but then they came and they stayed until 9 or so. That’s six hours of words. That’s huge.
And they weren’t just “yes” and “nothankyou” and “Ihaveacat,” either. Oh, no. There was some real conversation with my sister and my mom. Okay, so a lot of it was pulled from things I’ve written, but the fact that I could call it up and express it at all is awesome.
Today was a jabberer day, for sure.
But alas, to wretchdom I have returned. And at heart, a wretch I’ll always be. Speech has never been and might never be my chosen means of communication. My speech feels metallic, airy, spindly, coming out of my mouth… my typing is solid, true, and dense.
I don’t type much about fear, which, if you think about it, is a funny thing, because I have so much of it. Speech makes me fearful. When you speak words, you can’t bring them back and rethink them… not least because I have little to no memory for speech after about eight or ten seconds. But when you type words, they are there for good, and you can always reread. You can’t turn off your ears to speech, pause it, rewind it, and slow it down, but you can with typing. Not to mention that written words stay with me.
This square peg girl might itches to type almost constantly. When circumstances are such that I am not permitted to type, I am left in silence for extended periods of time. You can imagine how this makes me feel… disrespected, invalidated, not to mention frustrated… to name a few.
Well, now that I will only get 8 hours of sleep (the meds I’m on mean I need more like 12) as we are going to sensory-friendly Harry Potter in the morning, I shall try this sleep thing again and pray that no more posts write themselves in my head.
Duck or not a duck, a wretch I’ll always be.
You probably don’t know how much I crave touch and affection, even though I can’t stand it and shove it away.
And you probably don’t know that I’d give my left foot to be able to eat a salad without gagging.
You probably don’t know that I actually don’t like to sleep twelve hours a day.
And you probably don’t know how much I want friends.
You probably don’t know how much I want to be one of the pretty girls.
And you probably don’t know how badly I yearn to fit in.
You probably don’t know how much I want my speech to match my thoughts.
You probably don’t know that some days, I hate autism.
And you probably don’t know that typing is who I am. It makes me human, makes me think, makes me feel. It is all of me.
You probably don’t know that I’m more like you than you’ll ever know. Especially if you don’t take the time to find out.
So, whether it’s due to meds or what have you we don’t really know, but I drink a lot. Like, really, a lot, a lot. Like today, I woke up and had a 24-ounce of Diet Mountain Dew, had one on the way to speech, had one after speech (because hey, I’d been talking!), had one after lunch, drank some glasses of water, drank a big glass of juice, and will drink 1-2 liters of noncaffeinated, noncolored diet soda before bed.
I told you, a lot, right?
Well, as I was drinking my V8 Fusion, I noticed something weird on the bottom of my cup. First I thought the cup had gotten misshapen, and then I thought… hmm, I don’t think I washed this cup today. Come to think of it “wash juice cup” is not on my cleaning chart, so when was the last time I’d washed it? March, perhaps?
Yep, I was sure. It was mold.
So, I gagged, and I put the cup in the sink to soak with hot water and soap.
Then I sat back down at my computer and thought about how gross that was. I called Mom, who said it wouldn’t hurt me, so that much is good. Crisis averted. Hung up the phone.
Next thing I knew, I had a mouthful of soap. Not just any soap either, but dish soap with bleach alternative. It burned. Oh, gross. So, so gross.
Drank some more juice (not out of the cup this time!). No help.
Tried some Diet Sierra Mist. Nada.
Only one thing to do! “Mom, I have soap! Fix it! Mom!”
“Lyd, brush your teeth.”
Ahhhh.
Can’t make this stuff up people.
Oh, and just for kicks, Leigh’s birthday present (a photo collage I made and sent to Walmart to get printed)… is in Arkansas. No wonder when I keep going to pick it up, Walmart tells me they don’t have it. “But you called!” That’d be cause it’s in Arkansas. AK, PA… yep, I can see how they got that confused, can’t you?
So I’m trying to post a (totally unrelated…) picture of Elsie, but it’s freaking the whole post out. Perhaps I’ll try again at the end, if I remember by then.
Speaking of remembering, I forget what my point was. I keep getting ideas then forgetting what they were. Talk about frustrating, eh?
There’s something about posting something big, or ineffable, or even just very serious, that leaves me silent for a while afterward. I said, on Twitter, that it’s like having a baby… you need a break and can’t repeat the same feat over again for quite a while.
I went to speech therapy (which may occasionally slip through my fingers as ST, for those of you who don’t know what that means) today for the first time. I was very, very nervous.
The most important thing is that the SLP confirmed my need to type. She said that communication should never be frustrating, lest I begin to give up altogether. She says that typing is a perfectly valid means of communication, a popular one at that, and that if I am stuck, or frustrated, or overwhelmed, or shutting down, that I am not to drive myself crazy but to type.
So, once we’re all on the same page… easy, right?
Well, gosh, see, now I’m all shy about it! I know that some people think I need to talk and not type (nevermind that sometimes I simply can’t talk, so I don’t understand this sentiment), so now I’m afraid to type for them. I’ve fought for this, and now I’m scared. I know (or rather, I fear) what they will be thinking if I type. I may actually need to be encouraged and reassured in order to type for them, and I just don’t know if they’ll go that far.
Oi vey.
(Edit: Totally forgot that photo of Elsie! Here, I’ll try again.)
If you’re not really, truly listening, please don’t read this post. I mean it. Go away, please. It’s extremely important, and it’s not something to be read lightly. I hope you’ll read it, and think about it, and come back here and tell me what your thoughts are. I’m terrified that I’ll write this and scare everyone away and no one will leave me anything, but that’s a risk I’m willing to take, because this is important.
It’s been a typical Saturday. I’m on meltdown patrol, deescalating after a day that involved fasting bloodwork, out to eat in a noisy cafe, getting sick all morning from the small amount of gluten I ate, stopping at Mom’s, going to get Mom’s glasses, getting cat food, back to Mom’s, and about two hours shy of church is when I lost my words and said that I needed to go home.
Mom and I were talking in the car on the way home (well, I was typing, because Mom doesn’t mind terribly if I type) and I said something to the effect of, “Loss of speech is not a result of anxiety but rather one of an overtaxed sensory system.” Mom said that she understood that.
“So why don’t they believe me?”
I could tell Mom tread carefully. Well, she said… you seemed so social and so happy in high school, you did so many things, silk line and performances and everything, and you didn’t appear to have any issues…
I stopped her.
“I wanted to die.”
You what?
For almost 10 years, I prayed every night that I wouldn’t wake up to see another day. I didn’t actually have the energy to kill myself, but if I had, I probably would have. I hated everything about my life, I was on the receiving end of so much cruelty amongst my “friends,” I truly didn’t believe that I deserved to live, and then didn’t believe I deserved the relief of death at the same time. I knew this world wasn’t made for me. I didn’t know why, but even then, I knew it.
And that is what you need to know. You need to know that, at least for some people with autism (I’ve heard similar stories from other people), when you force them to be “normal,” you make life not worth living.
So when I am pushed to speak even though I can’t, when I am told not to chew or tic or flap, when I am told not to type, that is why I refuse to listen. That is why I fight back.
I deserve a life, too. It may not be what you think of as ideal, but it’s mine, and I will make it my own. I am a square peg, and I will not be made to fit into round holes. It’s time to start drilling square-shaped holes where I can fit. If you are here to help me in this, good. If you’re not, I have no need for you.
I wince, I cringe when I hear of parents trying to quelch the autism out of their kids. Yeah, maybe we can learn to be “normal,” to appear “normal.” I could. But there was no life in me. I was devoid of… anything.
I won’t live like that. I don’t deserve to. No one does.
And so I won’t. No more.
Be who you are, okay?
Do you mind if I just…muse while I search for a muse? I don’t know where this will go, but, let’s just see what happens, shall we?
I’m in dire need of some writing inspiration. Without writing, I feel like I’m withering, shriveling up, dying inside. My revelations and self insight and connection to the world come through my fingers, so when my fingers don’t move with some frequency, my knowledge of myself and my surroundings dwindles to nothing.
Typing is integral to being, understanding, connecting, for me. I must type. The talking world confuses me, boggles my brain. I don’t like that feeling. It’s hard to understand and even harder to respond. This girl needs to type to make sense of things.
You can encourage me to talk. You can even demand it. And, for some amount of time, I will talk. I will force myself. Sure, you might get ten words every hour, but I’ll do it. And then I’ll start to melt when I’m done talking. And then I’ll shake, and get dizzy, and feel sick. And then my head will spin. At some point, I will stop talking. The longer I push, the longer I’ll stop.
So then, we’ll sit in silence for long periods of time. How do you think it feels for me to be silent? I think you know that I am an intelligent, complex, sentient being… and for that matter, a being who needs to communicate (lest you wonder, I think that every being needs to communicate). So if there is to be no typing, what is to happen when I can no longer speak at all? That will happen.
I fear that they think I’m being manipulative. “But you were always so verbal,” they might say. Yes, but did you notice all the things I couldn’t talk about? Did you notice how limited I was? I want to communicate about more than Elsie, Food Network, medicine, NOTHANKYOU, and, “You would please stop that! My ears hurt!” I want to talk about feelings, dreams, possibilities, hypotheticals, my faith, my fears… do you see now? There is so much more. I am so much more.
I don’t think the goal should be decreased dependence on typing. No, I think the goal should be increased communication in a way that works for me.
I’ve spent 22 1/2 years trying to talk (I am 23 1/2 years old). I’ve also spent almost that long being frustrated, exasperated, confused, and horribly stressed out. I know that, to some extent, I must learn to function in society… but at the same time, I must learn to make the world work for me. In this case, that means typing. I am so over learning to fit in at my own expense. That’s not fair to me. What I am now all about is adaptations… in this case, typing.
At 23 years old and with the mentality of an 11-year-old (according to Mom, who knows these things), I don’t always know what’s best for myself. But I’m learning to know, and in this case, I do know. I frequently defer to treatment team and Mom, but this time, I want someone to listen to me. I have professionals (doctor, speech/language pathologist, therapist) who agree with me, too.
While I totally have it in me to be maniulative (you think autistics can’t be? think again) and refuse to speak, I will fight that urge and not do that. I will speak when I can, so long as you believe me when I say I can’t and let me type.
Compromise. Couldn’t we all use a little compromise? I think so.
Back to searching for my muse (truth be told, I don’t know what a muse is… I just know that one lets you write, so I want her!).
