Mini-Review: 600 Hours of Edward

I love this book.

It’s one of my favorites.

book cover and link

(That’s actually a quote from the book. Read the book, then you’ll know it’s funny.)

Mom and I read this book a few years ago. I think a coworker gave it to her. This was long before I realized I was on the spectrum, but of course autism has been a special interest of mine for a long time, and so we read quite a few books related to the topic.

This one is a work of fiction, yet reads like an amazing memoir. Edward is a 40-year-old man with Asperger’s and OCD. He is very realistically drawn and like my mom says, “You really root for him.”  As the title implies, the story takes place over a period of 25 days.  Although his world does get rocked, Edward first introduces us to his daily routine in a very repetitive fashion.  I remember when I first read the book finding parts boring and annoying (like the few pages he devotes to describing his top ten football games).  But when I read it a second time, I didn’t mind.  I recognized that the repetition and the “annoying” parts really work to give you a feel for what it’s like to know or to be someone with Asperger’s.  I will give a content warning – there is some profanity (mostly from his father) and the topic of sex is brought up.  But for mature readers this is still an excellent read.

As I read it this time I saved a few quotes to share with you.

First, dinner.  I will have the DiGiorno’s pizza.
It’s good, but it doesn’t taste like delivery, no matter what the TV commercial says.  I don’t think delivery has a taste.  It’s nonsensical.  Delivered pizza has a taste, but that’s not what the commercial says.  Imprecision frustrates me.

I love this guy.

I arrive early for two reasons: First, as I said, the lighting and wood paneling and the soft music help set me at ease.  Second, Dr. Buckley’s other, less-organized patients are always getting the magazines out of order.  I sometimes need the full 10 minutes to organize the magazines by titles and date.

Have I mentioned I like to organize things?

And of course another one of my favorites, because I have had this same problem in the world of online dating.  His therapist asks him about a woman he’s talking to online.

“She’s very pretty.”
“Anything else?”
“Her grammar is atrocious.”
“I think a high grammar standard may be a losing fight on the Internet.”

(Oh, his Letter of Complaint to the eHarmony founder is great, too.)

A final observation struck me this time as I closed the book – hope.  Despite all of his personal and situational struggles, the book left me feeling hopeful.  And that’s a pretty cool thing.

Another cool thing?  There’s a sequel!  And it’s awesome!

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Bullying

I have been wanting to share thoughts on this topic, but it’s just so massive and painful.

Today I saw this link shared on Facebook.

Aren’t You A Little Short To Be A Stormtrooper? The Passing of the Armor to A Bullied Little Girl

She writes, “Allison is eleven years old.  She loves Spiderman and Star Wars.  The other kids mock her for carrying a Spiderman lunch box.   Allison is taunted, ostracized, and even physically attacked by her peers.”

Seriously?  Seriously?  This is still happening? I mean, it was bad enough that the little boy was bullied for bringing a My Little Pony lunchbox to school, but that one didn’t surprise me (as much as it angered me).

*sigh*

I’ve heard people say these kids shouldn’t be allowed to have/do certain things because it makes them targets.  Because bullying is inevitable and they should be taught to fit in more.  “They’re just asking for trouble.”

NO.

Why can’t a boy use a “girly” lunchbox?  Why can’t a girl have a geeky lunchbox?  Why can’t an autistic child flap his hands in public?  Why can’t a girl walk down the street holding hands with another girl?

Because other people are going to laugh or think they’re weird or tease them or physically assault them?

HOW IS THIS THE VICTIMS’ FAULTS?

No.  I’ve had enough.  We need to be teaching the PERPETRATORS, not the victims.  We need to be changing THEIR behavior.  Making THEM act more appropriately to fit in with society.

Bullying is not okay.  I don’t care how “weird” a kid looks.  I don’t care how unique or unusual they are.  Because you know what?  We are all unique individuals.  And that should be celebrated, not squelched.

And you know what we call it when it happens outside of school? Hate crimes.   People are even killed.  This is serious stuff, people.

And you know what?  I’m sick of the nonsense coming out of my own “Christian camp.”  I’m all for respecting the fact that God created men and women to be different in some ways. But these “differences” the kids are being bullied for?  Those are cultural gender norms, not God’s.   Like Sunnie, the little girl who got kicked out of her Christian school for being a tomboy.  The school told her grandparents that they can refuse students who are, “Condoning sexual immorality, practicing a homosexual lifestyle or alternative gender identity.”  Because she’s causing confusion amongst students as to whether she’s a girl or boy.  By the way, Sunnie says she knows she’s a girl.  We’re not even talking about a transgender child here.  Just one who was told that “her dress and behavior need to follow suit with her God-ordained identity.” (Quotes and info from this Daily Mail article)  (OH, and the thing that really drove me mad?  I read that she originally cut off her long hair when she was three to donate it to cancer patients.)  I’ll tell you what, me and my two close friends are some of the biggest tomboys I’ve ever met.  And I can assure you that all three of us are very much heterosexual.  We respect that God made us women, but we don’t feel the need to be “girly” in the way our society expects of us.

No princess dresses for me.  I was Peter Venkman.

No princess dresses for me. I was Peter Venkman.

In my field, people talk a lot about getting autistic kids to have more “age-appropriate” interests.  They would say that my 10-year-old client shouldn’t be watching videos aimed at preschoolers and playing with his Thomas trains all afternoon.   I agree that developing “age-appropriate” interests makes it a heck of a lot easier to relate to peers and make friends.  But trying to take away these special interests is cruel.  This is a great time for you to go read this blog post, “The Obsessive Joy of Autism.”

So yeah, if I had a kid who was doing something that made him or her a target, I might even encourage them to tone it down if it was a matter of safety and the thing itself wasn’t huge to them.  But that’s like putting a  band-aid on a very huge, infected wound.  It’s only temporary.

We need to be teaching children to respect and love diversity.  To understand that not everyone is just like them, and to realize that this is what makes the world so darn cool.  To treat every human being they meet with respect.  I know it’s not easy.  It’s easier to try to make quirky kids fit in.

Recently I read this blog post and I wanted to share it here.  This should be required reading for all children:

A Bully’s Story: An Open Letter to the Middle Schoolers that Called my Son with Autism a “Faggot”

While you’re off reading that, I’ll be returning my attention to the feminine art of quilting.  I’m currently working on the Shredder, from the 80’s Ninja Turtles cartoon.

The Shredder quilt block

Soul Sisters

When I went to Guatemala, I had the opportunity to pray and to sing praise songs in Spanish with native Spanish-speakers.  I always knew that the Church was worldwide, yet getting to experience it made that knowledge so much more real.  It’s amazingly powerful and comforting to know that I am part of a family that lives everywhere I am likely to go, and that knowledge was a blessing each time I moved away from home.

I was reminded of my Guatemala experiences while watching this video this evening. Created by the Autism in Pink research project, it’s a documentary about autistic women living in four different European nations.   I really enjoyed it.  Even though we are separated by national borders, culture, and even language, I thought, “Look!  My people!”  It made me get a little teary.  I’m so glad more research is being done for women on the spectrum, and that more and more of us are learning about ourselves and working to support each other.

You know how in Escape to Witch Mountain, the siblings know they’re different and try to hide it and are basically only friends with each other (and the cat)?  And they finally [SPOILER ALERT] get reunited with their long-lost relatives. . . . who are actually from another planet?

There’s a reason autistic people tend to use the alien analogy so often.

Allegorical Daisies

Once upon a time, I was given a grow-your-own daisy kit for Valentine’s Day – you know, one of those little guys you can get at Target’s dollar bin.  I thought it was awesome, because I strongly prefer living plants over cut flowers. (Seriously, I just don’t get it.  You’re cutting off the flowers to bring them inside to die?  It’s like. . . mounting a deer head for your den.  Only the deer is creepier and lasts longer.  Oh, and don’t even get me started on the importance of buying Fair Trade flowers.)

 

I did my very best to care for those symbolic little seedlings.  But they never flowered.

The next summer,  I’d go out on my walks up the road and see hundreds of wild daisies.  I shared this photo with the caption, “I have to smile when I see the wild #daisies flourishing, in contrast to the ones I carefully nurtured from seeds that never bloomed. It’s a symbolic reminder to me that God is the one who causes things to grow.”  It was bittersweet but gave me hope.

Wild Daisies

This year I’m seeing those happy little flowers and they feel more like a slap in the face.

The end.

Misunderstandings

I recently had a phone conversation with a new acquaintance, who pulled the “You think you’re autistic?  I don’t see it” line.  I laughed and said, “You don’t know me well enough yet,” instead of saying, “Wow, I’ve spent nearly 30 years pretending and practicing to be normal – glad I was able to fool you – on the phone – for a single hour!  How dare you – you who say you haven’t even talked with an autistic person before – try to tell me who and what I am, as though you – who don’t know me AT ALL – know me better than I know myself?”  It was the first time I’ve had to deal with that kind of dismissive attitude, but then again it was also the first time I have explained my self-diagnosis to someone who hasn’t actually known me for a while.

(here are “20 Things Not to Say to a Person with Aspergers“)

     Then the drama struck when we were later texting instead of talking, and I was confused by something he said, and responded in a way that he found hurtful.  I couldn’t even tell which of my comments could be taken as hurtful, so I had to ask what it was I said.  After the conversation, I was feeling really upset over yet again failing at human interaction, but at the same time I was pleased to see growth in my self-awareness and ability to express it.  I think reading other Aspies’ writings and working on my own has helped with that.

Here were some of my shared thoughts:

  • I don’t know how to take things when I don’t know someone well.  It can be especially hard when texting.
  • When I don’t know what to say, I don’t say anything.  Sometimes it’s hard to figure out my thoughts and put them into words, too.  Especially when I don’t know what the person I’m talking to is thinking, so I don’t know what I should even be responding to.
  • Like you, I pull away from pain.  And that includes pain unintentionally inflicted on others.  It reminds me how often I misunderstand and am misunderstood.  And if I’m gonna hurt people, I’d rather just sit alone with my cat.
  • And it takes me time to get to know someone and know how to interpret all they say and do.  Until then, interactions can be confusing and frustrating for me.
  • I’m not saying I’m never understood, I’m just saying that understanding others and being understood is a frequent struggle for me.

Today I stumbled upon this post by Cynthia Kim at Musings of an Aspie, “The Seductive Illusion of Normal.”  This passage really fit how I’m feeling today:

I don’t live in a vacuum. I say and do stuff. People around me are affected by it. Even though they know I struggle with certain things–they know this logically. That doesn’t prevent them from being affected by my words or actions or lack of words or actions.

This is when the wish to be normal sneaks up and grabs me.

I’m using normal and not neurotypical here for a reason. Normal is an illusion and I know it’s the illusion that I’m wishing for at these times. I’m not wishing for a different neurology so much as a fantasy version of life.

It’s easy to be seduced by the idea that being normal would solve everything, that it would make the lives of the people around me easier. But, of course it wouldn’t. We’d have some other problems instead, because life is like that.

And still it’s there, born out of frustration and insecurity, of a sense of never quite being good enough or right enough or just plain enough.

Maybe it’s a self-esteem issue. Mine has never been especially good. I seesaw between overconfidence and underconfidence, with no idea where the sweet spot in-between lies. Does anyone truly know this? I’m not sure.

 

Recently I also read “The Isolation of Aspergers.”  Even though I don’t fully identify with most of her words, I do share many of those feelings.  There’s a lot of loneliness.

Video

Let it Go

I just saw this shared in an Asperger’s group on facebook, and I admit I got a little teary.  When I watched Frozen, I did think a few lines of “Let it Go” reflected the Aspie experience (though I prefer “Reindeers are Better than People”).  This treasure of a young lady took it one step further.  I would just love to give her a hug!

Insights on Life from the Legend of Zelda

On this lovely Sunday evening I was trying to decide how to spend my last few relaxing hours.  My sister brought home our old N64, and I’ve been thinking about playing that. . . and I’ve been listening to some great Zelda remixes (from ocremix.org) while studying. . . so I had Ocarina of Time on the brain.  I thought I’d share something I wrote a few years ago.

Back in 2008 I was a nanny, and the two little boys LOVED to watch me play my favorite old N64 games.  They were occupied and happy, I was having fun, and I was getting paid.  (Michael Scott might call that a win-win-win).  One night I composed this and shared it on facebook as a note.

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Tonight I was daydreaming about The Legend of Zelda. . . not surprising, since J. has me playing two hours a day. I finished Ocarina of Time, so now I’m playing Majora’s Mask. It’s a bit trickier, because it takes place over three “days,” after which you go back in time (with some of your items) and everything is reset to the first day.

Anyway, J. is really anxious for me to ride Epona (the horse) again. I read online that in order to get Epona, I have to help a girl at the ranch. To get to the ranch on day 1, I have to clear the road with a big bomb. To get the big bomb, I have to buy it in the town store, but first I have to complete a “training” thing. To get to the training place (which is miles away), I have to melt the ice blocking the door. To melt this ice, I need fire arrows. But to get the fire arrows, I have to beat up some baddie in the snow temple.

I was thinking about this, and the other items that I want to get that make the game easier/more fun. I was thinking about how annoying it was that they take so much effort to attain. But then I realized: that’s life. What we need to make it through, or to make the journey more enjoyable, isn’t given to us from the beginning. We have to save up our money to purchase it; we have to receive it as a gift; we have to earn the skill with practice. These things come from hard work and perseverance, friendship and powerful supernatural beings.

And besides, the challenges of attaining these things aren’t to be completed before “beginning” the game – they ARE the game. That is what living life is about – growth, becoming more Christ-like, improving our minds and relationships and skills.

Oh, and music has magical power. That’s another important Zelda lesson 😉

Pillows made for the boys, from the free patterns on fandominstitches.com

Pillows made for the boys, from the free patterns on fandominstitches.com

Ordinary Acts of Bravery

Today I was forced to confront scars I still have from my childhood experiences.

At work I have been stuck in a situation where I don’t agree with how a student is treated by the adults, yet I don’t feel like it is my place to address it.  It isn’t my classroom (my agency emphasizes to us that we are guests in these classrooms), it isn’t my client. . . but my heart aches for this kid.  A woman I work with was actually crying about it the other day.

One of my client's visuals from last year.

One of my client’s visuals from last year.

Why haven’t I said anything?

1. It’s not my place; it’s not my classroom; it’s not my client.
2.  I have “fear of man” issues.
3. I have no authority there.
4. I’ve tried modeling appropriate interventions and making subtle comments, which have been dismissed.
5. I give people the benefit of the doubt, and at first I wasn’t sure how this child was behaving in other settings, and if stricter interventions were maybe appropriate. (I’ve seen enough to say now that they are not.)
6. I don’t have the social skills to diplomatically start that kind of confrontation. . . I need to continue working with these people, and I am afraid of “rocking the boat” and creating a hostile environment.
7. I thought about printing out articles and leaving them in there, or filing a “bullying report” to the principal, but there are only a few adults who would know about it, so I couldn’t pull off a true anonymous action.

But then today, in considering talking to a teacher about it, I realized another deep reason.

◊♦◊♦◊♦◊♦◊

I became painfully bored in school in 4th grade, so my parents and I decided to try the local Christian school, where we were told I would be able to work at my own pace.  I wasn’t, actually.  But worse than that, I was no longer with peers who had known me for years.  I was the new kid in a small school where the kids had known each other since preschool and weren’t kind to outsiders.  This is where the bullying began.  It was never physical, just verbal and exclusion.  Because I wasn’t getting much more academically out of it, we decided I’d go back to my public school to get re-established with my class before we went to the junior high, where the four elementary schools combine.  Out on that blacktop play yard (that I had struggled to photograph years before) we had recess.  And I saw three girls, one of whom had been my best friend in kindergarten, being teased.  I had just come from a year of knowing what it felt like to be the outsider, to be teased.  So I tried to stand up for them.  And it backfired brilliantly.  I became the fourth target, and I stayed one.

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What does this have to do with today?

My 6th grade teacher was standing there.  Every day.  She was over by the door, watching the kickball game or chatting with another teacher.  She was there.  She should have seen.  She should have heard.  She did nothing.  And I thought, “What good would it do to tell a grown-up?  Won’t it just make it worse if they try to tell them to stop?”  So I kept quiet.  I rarely talked to my mom about what was going on, because she would have talked to the teacher, who I was afraid wouldn’t do enough and things would be worse instead of better.

Fast-forward.  I still have no faith that the powers-that-be will help.  I’m afraid it will just make it worse.  I’m afraid.

I’m afraid.

 ◊♦◊♦◊♦◊♦◊

A few weeks ago I read the Divergent Series.  That could be another blog post, since I found the topics of genetics and society pertinent to the issue of autism. . . but for now I’ll just warn any other sensitive souls away from reading them.  I did not like the ending.   Regardless, today I was reminded of a quote from the Dauntless faction’s manifesto:

“We believe in ordinary acts of bravery, in the courage that drives one person to stand up for another.”

After months of getting extremely emotional about this situation, and even asking for prayer from my Bible Study group, I decided to talk to a trusted teacher.  Not only do I greatly respect her, but I knew that she would agree that what was going on was not okay.  Today my schedule opened up to chat with her while her students were at gym class.  She validated my thoughts and feelings.  She said she would ask another educator for advice about the situation without naming names, and she would let me know what the next step should be.

I’m finally taking another stand against bullies.  But this time I have a teacher in my corner who is going to do something about it.