Reality check

I don’t want to write this post.  In fact, I already wrote it and deleted it.

But here’s the thing.  This life?  This story?  It’s real.  I can’t pretend that autism is all rainbows and butterflies to prove a point.  I also won’t buy into the fact that it’s a soul-stealing evil monster, either.  Balance, is what I say.  There is good and bad in it.

And these days, my sensory issues are really getting me down.  I’m a girl who loves go, see, and do.  I love to experience the world.  From the mall to church to horses to going to get Elsie P’s cat food, I love it all.

Loved, I should say, because it’s no longer so.

Someone turned up the volune on my sensory issues, and now they’re stealing my quality of life.

Yesterday I went to the doctor.  I’m having joint pain, sometimes in my hip to the point that I have to stop wherever I am and not move.  And then I hobble.  My elblow, my ankle, my knees, my wrists, and my fingers all periodically hurt… usually on and off, and it’s either fine or it’s all on at the same time.  We don’t know what’s causing it yet.  Could be RA, could be lupus, could be Sjogren’s… blood tests and x-rays will tell.  Could, in fact, be nothing (that’s my hope).

Anyway, the doctor’s office lights hurt me.  It was SO bright.  And I got a flu shot while I was there…

So last night I had a fever.  No big deal, right?  Except for the girl who can’t handle her body feeling “wrong” but doesn’t know what feels wrong!  I was yelling and whining and crying and hitting and banging my head on the floor and crying… on and off, all night.  I’m not sure what, if anything, or if everything hurt.  I was just a mess.

I woke up this morning and the fever was gone, but I’m still super quiet and cranky.  Still not sure what hurts, unless nothing hurts.  Anyway, Mom’s best friend B (because Mom won’t be back from vacation till tonight) picked me up to bring me to my therapist’s office… and I hate that waiting room.  More lights.  I only sat in it for maybe five minutes, but it gave me a hefty migraine.

After a wonderful session with Jannette (because how great is it to be able to sit and talk with someone who really, truly gets you?), we stopped for lunch, as it was nearly 3 and we hadn’t eaten yet.  We chose Mad Mex, as I love Mexican.  I went to a Mad Mex, oh, eight years ago, perhaps, and totally and completely shut down mid-meal.  Also melted badly when I got home (this was before I had words for things like shutting down and melting down, though)…

Come on, self, I said to me.  It’s just a restaurant.  You’re doing so well and conquering so many things.  One little Mexican place isn’t going to conquer you!

Except, it sure did.  Oh, my gosh.  I was literally seeing swirls and flashes of light, on top of my throbbing head, eyes, and ears.  I don’t know what it was- lighting, music, what have you.  I do NOT like something in there, whatever it is.  And so, despite excellent service and a waitress who loved my hat and tail, and despite delicious food, there will be no more Mad Mex for me.

And I’m frustrated.  Sometimes I feel like there’s a very typical girl stuck inside a body that just will not cooperate.  It used to be that I could handle the everyday world, just not things like, oh, a haunted house or an IMAX movie.  Now, every little thing sets me off, and most of those are basically intolerable.

This is my world too!  How do I make it a place I can belong, when I can’t go anywhere?!

I’m right here

I’m pretty open about certain aspects of my life… I have autism; I’m self-employed; I live way below the poverty level.  I don’t go shouting any of this from the rooftops, so to speak, but if it comes up, I have no problem stating the truth.  And then, why shouldn’t I?  Should I be ashamed of myself and my life?  I’m actually quite confident about it.  And so, I am open.

I’ve noticed something, though.

People speak about those who are poor or disabled like we’re… somewhere else.  I’m having trouble putting a finger on it with an example right now, but if you listen, I think you’ll notice the same thing.

Once at church, I overheard a conversation about “people who use food banks.”  The tone of the conversation made it sound as if those “people” were… far, far away.  I wanted to shout, “I’m right here!”

Or another time someone gave a presentation about kids in New York who live in the projects.  Oh, poor kids.  Again, “I’m right here!”

Or yesterday at the library, the librarian saw my puzzle piece ribbon on my backpack.  She said, “Why do you have a puzzle piece ribbon?  Don’t you know that’s for autism?”  Why, yes, I do, and in fact, I have autism.  “Good for you!” she said.

I’m not criticizing these people.  They haven’t done anything wrong.  I’m just asking that you keep in mind… I’m right here!

I believe

I believe.

I believe in myself and in you.

I believe that I have a purpose.

That I’m not broken or damaged.

That a girl with a dream and a keyboard can change the world.

I believe in our community.

I believe in our children.

In goals and ideals and words.

In working together rather than apart.

I believe that I matter.

That I am immeasurably blessed.

I believe that I am created in His image,

And that I’m worth it.

I believe that life is worth living,

And that tomorrow will be better.

I believe that we can make tomorrow better.

That I am not a puzzle to be solved,

But rather a piece of a beautiful puzzle in which every person is another necessary piece.

I believe.  Do you?

Recipe for a meltdown

In a large mixing bowl, combine the following:

 

1 morning trip to the pool with all its echoing

1 trip to the Goodwill under the lights to poke around

1/2 day of verbal communication

7,493 noisy kids

small dash of a quick run into the grocery store

1 evening trip to the library with people not being quiet and more lights

1 little cat who threw up in her favorite box and walked in it, then walked around the apartment

 

Stir to combine.

Allow to rest for one hour.

Place on middle rack of 350 degree oven for twelve minutes or…

Until batter explodes leaving a huge mess everywhere you look.

Git ‘er done

As many of you know, I’ve been tirelessly fundraising to bring my service dog home for the past few months.  My dog will come home sometime within the next year, whenever she completes her training.

I am just about 10%, or $500 away from completing my fundraising goal.  So, so close… and yes, so far.  I don’t have that money, and I won’t in the near future.

I humbly ask that you consider even a $5 donation to my fundraiser via GiveForward: Lydia’s Service Dog.

My dog will offer me independence by allowing me to go into public places without another person to support me.  My sensory issues are such that I tend to fall apart and melt down when I don’t have someone to redirect me.  My dog will provide this redirection in the form of physical contact.

Other tasks she’ll be trained to do include sense changes in medication levels in my body, be on meltdown patrol, and ease anxiety.

She will mean freedom for me.

Please consider a donation of any amount, and I ask that you help me to spread the word.  Think of it as a birthday present (my birthday is December 9th) or an early Christmas gift.

Someday I will pay the favor forward, as soon as I am able.

Oh, and if you donate more than $25 and email me with your address, I’ll send you a signed copy of my book.

Thank you.  Truly.

 

Lydia

What a sad world it would be

I went to a Town Hall meeting today regarding the cuts to the PA Department of Public Welfare budget… which means cuts to Medicaid.

And so many people were saying that the results of cuts to Medicaid services for kids with autism (because probably 75% or more of the people there appeared to be parents of kids with autism, along with clinicians who work with people on the spectrum, and autistics themselves, like me) would result in the necessity of long-term institutionalization.  In essence, sure, you’ll save the money now when we lose services because we can’t afford the copays, but it’s going to come back to bite you when we need to be institutionalized one day.

I read my piece in front of all those people and made my point, which was basically the same as what I just described, too.  They took my letter to show to the legislators.

It made me think, just now.  What a sad world it would be, no?  And it’s becoming very real, that sad world.

I’m not sure of the statistics, but surely the majority of people with autism currently reside in the community.  Many adults live with their parents or in group homes.  Some of us live semi-independently.  We work, shop, exercise, and play in the community.

What if we went back to the days of the 1950s when people with disabilities were shut away somewhere?

We’d eat… in the institution.

We wouldn’t shop.

We’d exercise in the institution’s hallways.

We’d play in the common room.

The world would lose so much of its color, its differences, and its interest.  People with disabilities are people, first and foremost.  I’m really not so different from you and yours.  Really, I’m not.

And this is my world too!  I belong here.  I don’t belong shut within four walls.  I don’t deserve to lose my rights.  I have a voice, a mind, and above all, a heart.  Have you given up hope on me so soon, that I won’t work and won’t make a place for myself?  I’m only 23, and I’ve only had services for less than a year.  I’m light years away from where I was in April when I started Waiver services.  The goal of my services is increased independence, and I am determined to get there.

One lady at the Town Hall Meeting said that her children, her brilliant, beautiful, and autistic children would grow up and make millions.  She has no doubts about that.  Does the state really want those kids, left without services now, to someday take their millions elsewhere?

But more than that (though, as we know, money talks)… do you really want me to take my intelligence and quirkiness and insight elsewhere, or anyone else with autism?  This is our world too.  We belong here.

Let us speak our minds.

Hear our voices.

Listen to our hearts.

What a sad, sad, world it would be.

Autism goes to school: Tips for teachers

There is so much misinformation and so many misperceptions out there about people with disabilities, and that includes autism.  I’ve read some things lately, comments by teachers or people who will teach, that have sent me reeling.  In typical Lydia fashion, I will write a Ten Things in an attempt to dispel these myths about people like me.

1. People with disabilities are not always happy, joyful, eternally childlike, or “perfect angels.”  People with disabilities are humans.  This means that we experience the full range of human emotion, including the uncomfortable ones, such as anger and sadness.  Some of us are generally happy, just like some people without disabilities are generally happy, but others of us are confused, angry, hateful, manipulative, and so on.  Autistic children display inappropriate and unwanted behavior just like typical children do.

2. Always assume we understand everything you’re saying when we’re in your presence, if nothing else, just in case we actually do.  I’ve heard teachers and parents talk together about a child like the child isn’t even there.  Not cool.  Especially with autism, some children understand everything you say but have no means of expression.  Many children have been labeled with ID and are, in fact, brilliant.  For years, parents and teachers talked like the child wasn’t there… when he was entirely there.  He was hurt.  And, unlike a typical child, he has no way to express that hurt.

3. Do everything you can to treat us age appropriately.  I look and act younger than my nearly-24 years, but I like to be treated like the intelligent and sentient being that I am.  If you think you need to use baby talk to reach a child… try music, dance, art, sign, PECS, sports, typing… and so on.

4. Please reduce noise… and not just auditory noise.  There is visual noise, smell noise, thought noise, and tactile noise.  If your room has fluorescent lights, use the blue light covers available on Amazon.  Cover busy carpets.  Tile floors reflect light which makes them hard to walk on.  Everyday school materials (Sharpie, glue, paints) can lead to intense reactions for people with autism.  Never ask more than one question at a time.  This causes thoughts to build up and collide without ever making it out o fmy mouth.  Finally, offer a sensory corner that is dark and quiet, where a child can rock in a chair, lay in a beanbag or under a weighted blanket, or spin.

5. Offer as many means to communication as you can think of!  Verbal communication is not enough.  For me, the ticket is typing.  For other children, it may be art, or athletics, or PECS, or Sign Language, or movement, or a certain kind of music, or design, or building… You may find that you can connect with a child via his preferred method of expression.  I should note here that Facilitated Communication, or FC, is a perfectly viable option for some people.  There have been times that I have become dysregulated to the point that I could not type, and tactile input from someone would have made it possible for me to communicate.  It CAN be done wrong, but when done right, it can open doors.

6. Always assume intelligence.  Did you hear me on that?  ALWAYS assume intelligence.

7. Rather than describing children as, “Jimmy, the low-functioning autistic child,” try describing the child as, “Jimmy, an autistic boy (or a boy with autism, whichever you prefer) who has poor expressive but great receptive communication, likes to spin, and is obsessed with dogs.”  Paint a picture of a person rather than a disability.

8. Routine, routine, routine.  If you lived in a world as confusing as ours can be, you would want as many things to be as predictable as possible.  If something like… opening meeting is always the same at school, and then it changed one day, it would be like you missing your morning cup of coffee, driving a different car on a different route, parking in a different spot, and teaching in a different classroom.  You’d be upset, too!  And the child who has little to no means of communication has no way to say, “Hey, not cool, and I’m really frustrated,” like you would.  They have only their behavior to use.  Visual schedules are HUGE for ASD kids.  I even have them around my apartment, not with pictures but with words.

9. Be careful how much you expect from a child who is not using is “first language.”  As I said, I type.  But you can’t expect the same degree of intelligence and insight to show through when I speak.  Imagine if you had to spend your whole life writing with your nondominant hand.  Well, for me, speaking is like doing just that.  Be patient.  We can learn and we can improve, but we need your belief in us and your patience.

10. Teach us to dream!  Build on our strengths as you work on our weaknesses.  Praise us when we’ve earned your praise, but not for every little move we make, or it becomes meaningless.  We are proud of ourselves when we succeed, so help us to see what we can do and become!

Stuck and chatter

As I’ve said before, I am me and I think I’m perfectly normal.  I don’t know any other self, any other mind or body, and so how could I feel like I’m lacking or unusual?  I can’t.  And I don’t.

But I do spend quite a lot of time lost inside my head.  It hurts, literally hurts, to be pulled out and forced to engage.  Sometimes I can’t and I shut down.  Today, staff was here and I ate my potato and typed and just went away for a while.  Staff knows not to talk to me or anything else when I’m either shoving my face in the cat or typing.  That’s my time, and that’s my signal to them that I need a break.  When I’m ready, I come back again.

Nobody ever asks me what goes on in my head.  They ask what I think, or how I feel, or what I believe, or for my perspective… but that’s different.  That’s what my mind does, my being.  But my head does its own thing altogether.

Two things predominate in my head.

One is the stuck.  I’m always stuck.  I get one thought, and that’s all that exists and that becomes my everything for the time being.  As you may (should?) know by now, Elsie P is the number one subject of the stuck.  I’ve been stuck on my cat for almost 14 years, and guess what?  It’s not going anywhere.  I can get stuck on needing something, wanting something, wanting someone, worrying about something, seeing something, going somewhere… you name it, I can get stuck on it.

There is good and bad to the stuck.  On the one hand, I can be deemed obsessive and maniacal and even inconsiderate.  So, your dad is sick?  Well, I have a cat.  My cat is Elsie Penelope.  She’s nearly 14 and has little white toes and a nose like an eraser…

But the good is that accomplish a lot, most especially what I set out to do.  I have a one-track mind, and if I have a goal, chances are very, very good that I’ll meet that goal.  Like, if I want to write a book… or if I want to be a speaker… or if I want my dog… it’s gonna happen.

There’s another common theme in my brain, though, and that’s the chatter.  My brain just goes, and goes, and goes… and it makes zero sense.  You know how you dream when you’re asleep and it’s senseless?  Well, my brain has auditory dreams 24/7 and they’re ridiculous.  Sometimes I just sit and listen to the chatter… “Wigwam. Z, Z, Z. High school band pants. Pea-coat green…” and so it goes, on and on.  It can be tough to catch, because it’s like looking directly at a star… if you look sideways at the star, it seems very bright, but if you look right at it, it’s not very bright at all.  Well, with the chatter, if I listen directly to it, it gets very quiet and hard to hear.  So I listen for flashes, and I entertain myself.

My revelations (that’s what I call a new realization or synthesis of two concepts that I’ve never joined before) do not usually come from within my mind.  They come from without.  I just… come upon them, and there they are.  I probably get a revelation between one and four times a week, and sometimes that becomes the topic of the stuck for a few days.  Then the chatter, well, who knows what it’s doing.

It can be really, really hard to focus beyond all this stuff!  I tend to fall into my head when people talk to me.  If you talk for more than… I should really time it sometime so I can be accurate… oh, say thirty seconds?… I’m somewhere else.  The chatter has begun again (I can turn it off long enough to listen to a few sentences), and I’m back to the stuck.  And then add in trying to sort through external sensory input… and really, I’m not really taking much in anymore.

The good thing is that the stuck and the chatter and the sensory issues weren’t quite as bad when I was younger, so I was able to learn.  I know for a fact I couldn’t handle a classroom environement anymore.  I wouldn’t take in anything.  I’m lucky I remember what class I’m taking in bible study… but I honestly don’t know anything much that he says.

I’m not saying that every autistic person has the same head issues I do!  Everyone is different, to be sure.  I just thought I’d explain mine (believe you me that this was NOT easy to figure all this stuff out; I’ve been working on it for months to be able to type this about it).

I don’t like to leave on a negative (i.e., “Here’s all the junk going on in my brain and woe am I for it.”)  No, no.  That won’t do.  And so, I give you, “How you can interact with me in light of this information.”  Cause, see, I try really, really hard to be polite, so I’m not likely to stop you and ask you to change your style.  I feel guilty.  I spend way more time than I let on… well, confused.

1. Slow down.

2. Less words please.

3. No soliloquies.  Give me a sentence or two, and stop.  Let me take it in.  Check if I heard you.  Then continue.  What happens if you give me more is one of two things: either I tune you out, or I latch on to one word or small idea within your speech and respond only to that, because I can’t process all of it.

4. I listen to the loudest thing, which includes the chatter in my head.  I cannot block out something louder than you and listen to you anyway.  I simply can’t hear you.  If it’s too loud, we need to go somewhere else, or we need to switch modalities.

5. If I repeat what you say more than once or twice, or if I ask you to repeat it more than that, please write it down for me.  Text it to me.  Email it to me.  Type it up on my iPod for me.  It’ll sink right in.

6. If I’m not really responding and you’re frustrated (Dude, come on… I just told you my whole life story and all you have is “oh”?), ask me if I can type for you.  You’ll get a lot more.

I hope I’m not asking too much.  I really hope.  I’m trying to make for an overall positive communication experience for both of us, keeping everything in mind that’s making it challenging.

 

Blue glasses

I see the world through blue glasses.

Blue for autistic,

Blue for Christian,

Blue for blogger,

Blue for Lydia.

I can’t possibly see through pink glasses.

And you can’t see them through blue.

If I put on pink glasses,

My world would fall apart.

If you tried on my blue glasses,

You wouldn’t be able to see very well.

So you wear your glasses,

And I’ll wear mine,

And all can still be well.

Rough night for Elsie P

I woke up at 12:26 AM to Elsie throwing up.  She sounds like she’s throwing up most nights, and usually nothing comes up, so I wasn’t worried.  Back to sleep.

3:30 AM.  Cat wants food.  Realized pump site fell out.  Suddenly, it hit me.  Elsie P’s been grooming a lot.  And scratching.  I picked her up aaaaand… fleas.

So the guy next door who is, uh, how to say it nicely?, he’s… just not all there… well, he puts his cat out the window (we’re ground level) on a leash.  And I keep saying we’d get fleas.  People kept saying oh, no, no, no.  Well, guess what?

Somewhere in the process of frantically walking around and fussing over Elsie, I saw the throw up.  It looked like a human threw up.  Poor baby.  And she’s all itchy.

I pulled all the bedding, including my own, all the throw rugs, and bagged them up.  I vacuumed everything to death (yes, at 4 AM), including the couch.  There is flea dirt EVERYWHERE.  Elsie’s boxes and favorite blankets were covered.  I keep finding it on me, too.  Ew.

Anyway, mostly I’m worried about Elsie being uncomfortable.  And she’s going to need a bath, and you know how she feels about baths, right?  Human as she may be, she is, after all, a cat who hates water.

I woke Mom up at 2 AM her time.  We’re going to have to call the vet (he might want to put her on flea stuff, which is expensive, I think), go to the Petsmart and get a flea comb and flea shampoo, take Elsie and I and all our stuff to Mom’s, have one of the guys (Mom’s guys at work) come and exterminate the place, and wait for it to dry till we can come back.  Now, I’ll be okay at Mom’s, but Elsie hasn’t been there in almost a year.

Would you mind a prayer for Elsie P?  Poor old girl can’t get a break.