The meaning of moderate

I’ve typed and trashed three posts tonight.

I get so far into them, get crazy agitated, and close the window before I completely freak out.  What is this, and how soon can I make it stop?  Seriously.

So here’s the thing.  This is my space.  I get to express myself based on my experiences and my perceptions as a young adult woman (did you know that I hate refering to myself as such?  I’m still the kid, in my mind) with ASD.  It’s not always pretty, either… except for when it’s downright hilarious… but it is what it is, and I just report without judgment, to the best of my ability.  I hope you read without judgment (meaning, don’t deem my experiences “good” or “bad,” just take them for what they are) as well.

And here’s the other thing.  When you type about your experiences, you inevitably piss someone off at some point.  Someone’s going to take issue with what you say.  Usually, I try to avoid those subjects.  Tonight, I’m frustrated enough and need to express myself badly enough that I’m going to risk it.  I’m going to try to make it clear that I’m not out to get anyone in any way.  But still, please don’t take me all that seriously tonight, okay?  Just let me express myself.

I’m a firm believer that “mild” autism isn’t better than “severe” autism, and that “moderate” isn’t somewhere in the middle.  It’s such an individual thing, you know?  You might have someone who has good communication but crazy sensory issues that lead to behavior problems.  You might have someone who is nonverbal but surprisingly social and has decent self care.  And, you might someone who is fairly mildly affected all around, but is super depressed because he is so aware of his differences.  We’re all in this together.  It’s not a competition.  Support, validate, believe.

But tonight, this whole “moderate range of autistic disorder” thing is on my nerves.  Why would that be?  It’s because I’m not mild enough to just blend in with everyone else, regardless of how difficult it might be.  I mean, I kind of can to look at me, but the minute you greet me with a hug and I shout and swat at you, you’ll kind of figure that something’s up.  I’m not saying it’s easy for people with AS/HFA to blend in, at all.  I’m not even saying it’s beneficial.  It’s just that right now, I wish I even had the option.  Also, there are groups for people with AS galore in Pittsburgh, but I basically get lost and agitated in them.  The only way I could potentially participate would be to type, but they go so insanely fast that it just isn’t a good option.

And then, at least here, there are groups for people with severe disabilities.  There’s even a group at my church.  And frankly, I feel patronized, and I hate to feel patronized.  Just because I make no eye contact and repeat myself and all those things I do, it doesn’t make me five years old.  And then, there’s the issue that people who patronize me tend to want to touch me, which leads us right back to where we were last paragraph.

I’m different enough to the point that people notice and think I’m either a brat or a jerk… but not different enough that they think I might have a disability.  Last weekend when Mom was chatting with the older lady in Petsmart and I was whining and interrupting and poking her, I wouldn’t doubt that the woman thought, “What on earth?”  Or when I yell at the mall, or when I swat at the doctor’s office because she touched me.  When I interrupt or ignore (I feel like I never get in between and get it right), when I never ask, “How are you?”, when I forget to say thank you.  Brat, brat, brat.  I actually thought I was a brat for many years.

Moral of the story?  Lydia’s a grump tonight.  (I told you I can be funny).

But no, really, the moral of the story is that people need to be educated about all degrees (and that’s not really the right word… what I mean is, all variations) of autism.  About people who work their butts off to seem typical all day, then go through hell when they get home.  About people who are profoundly affected and cannot be left alone.  And, about people like me, who may not seem “disabled,” right away, but who just come across as cranky, bratty, and agitated, more often than not.  People who can be pretty verbal (or other days, not at all) but will never ask you how your day was.  Who will type books to you online and then run when they see you in person.  Who will carry on a conversation with their mothers but the second they step under the Macy’s lightning will turn into a monster.  People who wear sunglasses in the grocery store and then go silent when they get inside.

As I often say, all I want is what you want.  I want a world where I can be free to be myself.

Not so different after all.

 

Free

I was just pondering how incredible it is to be so free in so many ways.  Free to speak, free to worship, free to sing, free to be a square peg.

At the same time, I was thinking about how frustrating it is to have a body that doesn’t do what you want it to do, or in other words, to be captive.

I gave a little PSA on Facebook in anticipation for the holidays and family coming in.  My family likes to hug, you see.  And at least in recent months, my reaction to touching is either screaming, swatting, or both.  Mom’s not very big, and I don’t remotely hurt her when I do it… but it’s enough to startle anyone in the room and it sure makes me feel bad.  Perhaps I ought to feel the very worst for lashing out at Mom, but I think it would actually be worse for my in-laws or others I don’t see everyday.  And so, the general rule is no hugs, or at least not without permission.

Or, on a lighter note, how about having a mouth you can’t always control?  And no, I don’t mean cussing people out!  I mean that I’ve gone through a phase, on and off again, for more than 10 years, in which I exclaim, “O-HI-O!”  It’s part of a song which lists the 50 states.  I know about 2/3 of the list, but there are significant gaps.  Still, I prefer O-HI-O.  It just pops out, randomly.  Sometimes I also do Wy-oooo-ming! but it’s usually O-HI-O!  My therapist knows the rest of the song, so she’ll fill in the blanks if I start.  Heather can too.

Speaking of being captive, I’m getting to the end of what my fingers can type here.  They’re significantly larger than when I started typing, forty-five minutes ago, and they’re getting tough to move.  Again, captive to my body.

But I am not my body.  I am Lydia.  And Lydia is oh-so-free-as-can-be!

 

If I had a way to tell you

If I had a way to tell you
With my words then I would say
First and foremost that I love you
I’d tell you every single day.

I’d tell you how much it pains me
To whine and scream and fight,
But that I can’t seem to help myself,
In this world so loud and bright.

I’d tell you that inside my head,
There’s so much that I know,
Math and words and music,
But I just don’t know how to show.

I’d tell you how very much
A part of your world I wish to be.
But that there’s just too much going on
To join in your games, for me.

I’d tell you that I’m in here!
This, I want to scream and shout.
I’d tell you that I’m a person, too,
Of this I have no doubt.

And I’d tell you, don’t give up on me!
I have such a future bright.
But only if you believe in me,
And keep it in your sight.

I’d tell you how much more to me
Than autism wants to come through.
I have interests and desires,
I’m just waiting to show to you.

I’d tell you that I know things,
That you would never guess.
Not by voice, but hands and body,
This is how I express.

I may never speak your language,
But if you can learn mine,
I will tell you, tell you, tell you…
I tell you all the time.

“You don’t look autistic”

Well, see, I only have 26 minutes to write this post.  I can’t save and come back later, because my bug runs off and I have no idea what I was getting at.  Posting is a one-shot deal.  Set your timers.  Ready, go!

The question of the day (along with number 4 and letter P) is, what does “autistic” look like?

Does it look like sitting in the corner, screaming and banging your head on the floor?  Because, at least in public, I don’t do that.

Does it look ugly?  Why, I’m cute as can be (and, in my opinion, the VAST majority of kids with ASD are too!) thankyouverymuch.

Or how about silence?  Is autism silent?  I can be very vocal.

Clearly, these are stereotypes, and once that I don’t (always, even usually) fit.

Truthfully, at first glance, you probably wouldn’t peg me as autistic.  You might notice something is “off,” but even then you’d often be hard-pressed.  When you come up to talk to me, I can be very engaged and very vocal.  I don’t make eye contact, but I do look at mouths (they help me to hear the words), so you’d never know it.

I thought I’d give you some examples (these are only examples and do not cover the whole realm of things!) of things I do out in public that, if you’re thinking, might make you think autism.  Why does it matter?  Because hopefully, when people read this, they’ll be able to think, “Hm, maybe he/she is autistic and not just a brat,” when out in public.

So we’re at Petco, with Mom and Mom’s best friend.  Mom and her friend are talking to two older ladies about these parrots.  I make the parrot dance (if you go up and down, he goes up and down) and walk away.  I come back every few minutes to feel Mom’s nails (she gets them done so they’re super smooth), make an unhappy noise (because I want to leave), and wander away.  Rinse and repeat, oh, six or eight times.  Finally, I walk up to Mom, shove my face into her shoulder, and whine, “No THANK you.”  She knows I want to go, and that I’ve been patient (for me), and so we go.  I wasn’t just being whiny- the lights were hurting me.

Or how about we’re at the restaurant.  I let Mom’s friend (yes, I was with her two days in a row!) do most of the talking, but once or twice I shout a delayed “thank you!” as she walks away.  She turns back, then keeps going, a little confused.  As we get ready to leave, I say, “I have chicken tenders everywhere I go and these were delicious!”  Again, she’s not sure what to say for a split second.  She recovers without issue.

Sometime in the future, when I get my dog, I’ll be out in public sometimes with a cane, sunglasses, and a service dog.  I foresee the public assuming that I’m blind.  Keep in mind that what looks like blindness may in fact be autism!

People often peg autistics as inappropriate and awkward.  I can be both, but not exactly blatantly so.  If you tell me your cat died, because you said “cat” it will trigger, “I have a cat!”  I can also be a bit awkward, especially so around my peers.  I do better with older people.  But when I am, it’s usually because I’m so excited and happy about something that you kind of overlook the awkwardness.

Of course, this is all how I am on a more engaged day.  Other days, you may realize a lot quicker than something’s up, and that’s okay too.  Just please, continue to talk to me like you always would.  I’m still Lydia!

Sum of the parts

The (awesome, if you ask me) analogy that follows is all Leigh.  Not Lydia.

Pretend, for a moment, that you find out that I’m going to give a presentation in your town next week.  You email me to ask if we can meet up the next day, maybe have some lunch.  I say, of course we can.

So I show up to lunch, and do my best with the whole meet-and-greet routine, likely wandering away at one point if not more.  And you notice, oh hey, she’s wearing a bright pink hoodie.  Say you didn’t know I had a bright pink hoodie (even though I think I’ve mentioned it before because it’s an awesome hoodie so you probably actually do know, but this is pretend, so in this case, you don’t know).

How would you react to my hoodie?  Would you be shocked that I have a pink hoodie?  You probably wouldn’t even notice, right?

Now, practically, what if I showed up to our lunch date walking with a cane?  What would you think?  Is it really any different than showing up in a bright pink hoodie?

I want to say, first and foremost, that what I’m about to say does not mean that I’m complaining.  I’m just explaining, just reporting.  I’m not upset about my situation.

My body isn’t what it used to be.  Starting in, oh, kindergarten, my arms and face got very, very pink and splotcy.  In middle school, my knees would swell in hurt, but I could usually deal with it.  By high school, my right hip was severely painful and locking all the time.  Every time I sat still for more than, oh, a half hour, I couldn’t move it when I got up.

And yes, I fussed.  I don’t handle pain well.  It’s gotten to the point that I can’t very well walk on this hip a lot of the time.  My fingers look like sausages.  My feet and knees swell and turn red.  Still the rash, and now I get fevers every night.

Diagnosis? Juvenile Rheumatoid Arthritis.

If you’re like me, that leaves you with a big, fact, “Oh.”  Yeah, I didn’t know what that meant.

The doctor said that, because I can’t take steroids due to the diabetes, I can consider methotrexate, which is a really hefty drug used for chemotherapy.  It would help the pain, swelling, and fevers, but it can also be very dangerous.  If we don’t control the inflammation, I risk joint deformity and issues with my vital organs.

Don’t ask me if I’m going to take it yet, because I don’t know.

So there’s your background.  Again, not upset.  I am me.  Nothing is going to stop me.  Yes, sometimes I have to type with two fingers.  No, my fingers don’t straighten all the way anymore.  Does that make me a different Lydia?  Not in the least.  Unlike autism, which finds its way into my very identity, JRA is just something that affects my body.  I am not my body.  I am Lydia; I am my words, my thoughts, and my heart.

To come full circle, I’m faced with using a cane because sometimes, when we’re out and about, my hip acts up and I get stuck wherever I am.  I debated all week about writing this post.  I talked to Leigh about it, and being the awesome Leigh she is, she said how I don’t owe it to anyone to tell them.  But then, I’m not ashamed, and why should I be?  She said to write if it connects to autism, etc, and you know… it does.  Truthfully, everything connects to autism.  Can’t get away.

When you see me with my cane, or my pink hoodie, I hope neither catches you up.  I hope you just see Lydia.

Alive in Christ

I go to a very large women’s group (worship and study) every Wednesday morning at church.  The best part is the singing, but I struggle quite a bit with the environment and crowd and whatnot.  Somewhere deep within me, though, I yearn so desperately for fellowship.  And so I go.

I’m in the Ezekial class this semester.  When it comes to crazy-confusing books of the Bible, Ezekial is way, way up there, if not at the top.  It’s a hot mess of literary styles, for one thing.  I never know what’s literal, what’s not, and what’s somewhere in between.  To be honest, I don’t alway sget a lot out of it.

But today was different.  We had a different pastor teaching us (nothing a bit wrong with the usual teaching pastor; he’s fabulous too!).  I don’t remember 99% of what went on… but one thing stuck.

“The purpose of the Christian life is to die to self.”

Not my will but Yours be done.

It’s not about me.

To God be the glory.

Die to self.

As I continue to digest that not-so-small concept, I struggle.  I lived for so many years with no self-esteem, no sense of self, no self-respect.  Hear me on this; that was not Godly either!  If an artist creates a gorgeous piece, and you defile it, walk on it, and throw it in a dumpster, is that honoring the artist?  No more is it honoring God then to hate yourself, to hurt yourself, to deny yourself an identity and individualism.  I was dead to self, but it was not in a Godly way.

But in this new-found selfdom that I write about so much… is it right, either?  To promote myself, to celebrate myself?

The answer is, it’s all in your head and your heart.

When I promote my message, it is with the mindset that I want to spread God’s love and Word to others in the autism community.  There are different ways of doing this, and I choose to go about it in such a way so as to make people feel welcome rather than shout rules at them.  I try to make it about relationships; love me, love my Father.  And so, when I say things like, “I belong here, too,” and, “People with autism are people first,” what I mean without saying it in so many words is that, “God created me just as He created you; I am first and foremost a child of God, just like you are, no more or less, so please treat me as such.”

And when I promote celebrating oneself and self-confidence, I don’t mean, “You’re number one!” I mean, “Celebrate the way God created you to be,” and “Bring glory to God for what He has done through you.”  It’s not about glorifying yourself, but rather, glorifying the one who gave you a self to begin with.

I believe that people, all people, from all countries and walks of life, from all backgrounds, every color, religion, neurology, and sexual orientation, are beautiful creations.  We are people first, all of us, and we we have far more alike than we do standing between us.  This doesn’t mean that I agree with every decision everyone has every made (far from it), but it’s not on me to judge you, and I’m not going to, I sure hope.

I never realized what a tough thing it is to be in the world but not of it…

 

Oh hey, Bug

What’s a girl to do when her writing bug goes missing?  Well, if you’re this girl, and you haven’t had functional speech in some hours, sans writing bug, you will do a lot of growling, yelling, and making other noises of general dismay.  And when Mom says, “What’s wrong?” You’ll growl again, or if you’re lucky, you’ll shout “I DON’T KNOW!” at her.

You’ll leave your mom to eat in silence, unable to talk but unable to get it together to type to her either.  Poor Mom really gets the brunt of this…

Anyhow, never fear, as I have found the bug once again.  He must’ve been in the hotel room bed all the time, because that’s where I was when he popped up.

So here I am, in Portsmouth, Ohio.  I’ve been up since 5, and from 9-1 I gave a presentation in a ballroom, had lunch, sold books, signed books, and chatted.  Yes, I chatted.  Maybe more accurately, I tried to chat.  I kept finding myself wandering away when I got overwhelmed, but I did try.

And oh, can I tell you how awesome this trip has been?  Nevermind the fact that the Autism Project of Southern Ohio funded the last big chunk of my service dog.  You read that right.  My dog is funded in full.  Nevermind the fact that our hosts have spared no luxury for Mom and I.  Nevermind the hot tub that I vegged in this afternoon and nothing hurt… the appreciation and acceptance we’ve felt and the people we’ve met have been amazing.  From meeting a couple of people I’ve known online for ages to meeting brand new friends to just hanging out with Mom (when I’m not yelling at her…), it’s been so much more than I ever could have dreamed of.

Something struck me today.  As I was telling mom that people had messaged Wendy (the woman in charge of the Autism Project) to tell her that they enjoyed my presentation, she said, “Well, that must make you feel good.”  And it does.  Don’t get me wrong; I like praise as much as the next girl.  But being someone who for so many years had so little sense of self, sense of personhood… I absolutely relied on praise to tell me that I was good enough.  Until very recently, I obsessed over the comments on my blog, because without comments, I deemed a post “lame.”  But, and this is what I told Mom, “I don’t need accolades to feel good about myself.”

The fact is that, in God’s economy, I’ll never be good enough.  I can’t be perfect.  I need Jesus to do that for me.  Good thing for me, He already did, eh?

But there is something I can do, and that’s to be Lydia, the best Lydia I can be.  So, see, no offense, k?  But it’s not up to you when I’m good enough.  That’s my decision, and I’m taking ownership for it.

Now, if only I could take ownership for the nonverbal outbursts and for that darn bug that, inevitably, will run off again.

Where is my bug?

I’ll probably ditch this post before I publish it, because, like posts have been doing lately, it probably won’t sit right with me and come together nicely.

My bug went somewhere… you know, my writing bug, or muse, or inspiration, but I think of him as a bug.  He up and left, and now here I am with so much going on and nary an angle on said goings on about me.  Come on, bug.

Still no bug?

 

 

Darn bug!

 

 

Since we’re still bug-searching…

I wanted to tell you about a conversation I had with Mom the other day.  She called; I picked up.  She talked.  I didn’t listen.  I was very involved in something online and the TV was on, and so, rather than, “Can you hang on a sec?” or “Can we please talk later as I am otherwise engaged at the moment?”  What do you think I said?

I DON’T WANT TO TALK TO YOU!!!!!! Oh yeah.  Nice one.

Thankfully, it was Mom, and she knows “overwhelmed autistic girl” speak for, “Hey, now’s not a good time.”

As always, I will try harder next time.

Off to search for my bug again.

Had it up to here

Confession time, k?  It startles me when I come across an autism blog I’ve never even heard of.  I mean, duh, right?  Of course there are zillions more blogs than I know about… but in the world of autism, posts make their popularity rounds.  There are the super bloggers, of course, for whom most every post in popular.  Honestly, I rarely even look at my stats until someone asks me how many people look at my blog everyday.  The answer?  Some days, 50, and others, nearly a thousand.  I don’t get excited about all that.  Not to say I didn’t at one point, but now, it’s just… it’s what it is!

Anywho, I was going back and forth about blogging regarding an incident that happened today (it really was quite minor and probably shouldn’t even be referred to as an “incident”).  But then, and I don’t remember how, I stumbled across the Thirty Days of Autism blog and found this post.

And truth be told, I didn’t make it all the way through.  I kind of have the attention span of a fruit fly, which, combined with memory issues (when I read large chunks of texts, I don’t remember where I started so I come up in the middle, totally confused) and the fact that it just doesn’t all sink in sometimes… but the take away from that post is the ideas behind calling someone “high functioning.”

It’s amusing, really, because when I say I have autism, people often say, “You must be very high functioning then!”  And then, when I say I have mild autism/HFA, clinicians say, “Um… you’re not exactly HF, sorry…”  I’ve long tried to categorize mysself, but at least for now, I’m over it.  I have classic autism, no modifier required, because regardless of which one you use, someone will find fault with it.

The thing that stuck out to me in that post, though, was the piece about comparing people.  That’s what it’s all about (doooo the hokey-pokey!), isn’t it?  It’s about comparisons.  Comparisons to a list of criteria, or comparisons to another autistic, or comparisons to a typically-developing person.

I’ve always been one for comparing.  I wanted to know how I measure up to others, because my innate sense of self was utterly non existent.  So, short of knowing that I was thisser than so-and-so and thatter than such-and-such… I had no idea who I was.

But that was then, and this is now.  Now, at least most of the time (barring the past week or so where I’ve been struggling a bit), I know who I am.  I know of no other way to describe myself than “I’m Lydia.”  I know what that means, what that entails, and I like that person.  So, the days of comparing are out.

The next bit of story involves some background info, or it won’t make as much sense…

See, I don’t blog about every aspect of my life.  Someone today asked me if I write about health issues, and I don’t.  Unlike autism, which has it’s awesome side, chronic pain and type I diabetes and migraines, well… not so much.  They kind of suck, actually.  I view my blog as my own little piece of the world.  I’m honest with you, but I do leave some things out, because who wants to read about blood sugars and pain?

Fact is, what started with a bad (by “bad,” I mean, locked and then limited range of motion, and very painful) hip when I was maybe 14, has become chronic joint pain.  It used to be that as long as I was warm, I didn’t hurt, and as long as I stood up every so often, I didn’t hurt, but now, at least for roughly the past month, I just hurt.

I take a therapeutic swimming class three times a week as a way to get exercise and work on my joints.  I LOVE swimming.  I do laps in the beginning (and hey, I couldn’t swim across the pool 6 months ago but did 25 laps today)… but if the water is chilly, everything hurts.

And so, as we were doing push ups on the side of the pool, I was wincing because my wrists hurt.  I was asked, “Do you hurt, Lydia?”

“Yes.”

“What hurts?”

“Right now my wrists but more or less everything to some degree.”

“Well, stop doing this exercise, and we’ll go deep water and you’ll loosen up.”

And so we did…

“Do you hurt now?”

“Just an ankle but it’s better.  I’m tired of hurting; I’m 23!”

“You have to keep in mind that so many people in this world hurt so much worse than you.  You have to remember that you have it good.”

Comparisons, again.  They hurt more… does that make me hurt less?  No; in fact, today is the worst day of pain I’ve had short of having a broken bone.

Some people are more autistic than I am.  Does that make my struggles less?  Some people are less so.  Does that make mine more?

I hear from parents who are afraid to talk to other parents whose children are more severely affected because, “At least we don’t have it that bad!”  It’s not a matter of good, or bad, or more, or less…

You deal with what you deal with.  Especially within autism, the struggles of people who appear “HFA” or those who appear “LFA” or whatEVER… they’re different, and that’s all.  Yes, you might have a 16-year-old who doesn’t speak and is not toilet trained… but you might also have a 12-year-old with “mild” autism who is cutting and starving herself because no one understands her and she doesn’t know why, since her parents thought it was no big deal and decided not to tell her.

I can’t say anymore on this.  But, please; enough with the comparisons.

On balance and tempering

So hey, it’s Autistics Speaking Day.

Basically, it’s a day (November 1st) when autistics, friends of autistics, family members, and so on and so forth, speak out for themselves.  This takes the place of anyone trying to speak for us.  Regardless of the groups with which you do or don’t align yourself ideologically, Autistics Speaking Day is a chance to have your voice be heard, in combination with many other voices, and so, I find, it is quite a good thing.

I don’t know how much I’ll truly speak, per se, as opposed to how much I’ll whine, repeat, and sit there silently… but I can write, and so I will.  I don’t have some big, huge revelation or some super important message for you.  Maybe I should apologize, but I’m not going to.  I can’t control when I have realizations.  And so, I will type about what’s been on my mind and what I’ve been working on in my life the past few days.

For many, many months, I’ve gone to bed most nights saying, “Tomorow, I will be real.  I will be me.”  And about half the time, I wake up the next morning with the same determination (the other half, I forget and then don’t think anything the next morning because I’m too tired!).  Until someone walks in the door… then I put on my “typical” face to the best of my ability.

And that was really bothering me.  I’m autistic, not typical.  I likened it to pretending to be straight when you’re gay.  And you know, it hurts me, a lot, to do that.  It confuses my sense of self, and it puts a lot of stress on me.  I kept wishing I could be strong enough to just be… me.

In talking about this to friend J last night, she said, well, wait a second.  You see, the whole concept of tempering ourselves or having different faces for different people and settings has long upset me.  I only caught wind of that whole idea, oh, six or eight months ago.  It doesn’t sit well.

But just maybe my version of doing that is controlling how much of my autism I let out there for the world to see.  Granted, sometimes it’s all out there and I can’t control it one little bit.  But sometimes I can, and I do.  After all, it would make most people kind of uncomfortable for me to be my unadulerated self all the time.

And still, I wonder what’s right.  Maybe I’m not used to the concept of tempering myself, or maybe this isn’t a case where it’s appropriate.  How much does the world need to adjust to me, and how much do I need to adjust to the world?

So often, I hear advice and blindly follow it.  I’m not the best with choices and self-direction, so when someone tells me to do something, sometimes I just kind of listen, adopt it as my own, and do it.  But I’m trying not to do that this time, to listen to advice to be sure, but to carefully weigh and consider and above all, pray through this.