Thankfulness

I took a walk today, and I put on a Boundless Show podcast (Episode 354). Lisa was interviewing Louie Giglio about his advent book, and she asked him a question about single adults trying to hold onto hope instead of dwelling on what they’re not having.

We always have that choice of saying, well this is what’s not happening. I’m gonna focus on what isn’t happening. And the end of that journey always leads us to a really dark place.

Yeah.

It was good timing.  You’d think that since two days ago was Thanksgiving I would have figured it out, but lately I’ve really been down.  Mostly because it’s so easy to fall into thinking about the things I don’t have.  I don’t mean the stupid things like a functional iPod (though I miss that), but the big things.  Marriage. Or even a date.  Kids. A group of friends to hang out with all the time, like when I was younger.  A home of my own.  A great job.

It’s hard, because too often I look at the lack and blame it on not being good enough, or being weird.  Or I catch myself thinking it’s not fair.

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A very wise person once told me,

God answers our prayers in three ways:

“Yes.”

“Not yet.”

“I have something better for you.”

I’ve tried to hold onto that, the idea that he isn’t simply saying “no” to things, but he has a plan for my good and his glory.  It’s hard to trust sometimes.

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Anyway, I realized on my walk I should spend some time reflecting on what I *do* have.  As soon as I heard that part of the podcast I knew I should sit down and blog.  This list could clearly go on for a very long time, so I’ll just hit a few highlights.  It’s a good reminder to resume the habit of writing down daily blessings, a la One Thousand Gifts.

 

I’m thankful for the opportunity to go back to college.  I’m thankful that my inheritance from my grandfather meant that I was able to jump into getting an associate’s degree without the added stress of going into debt.  My classes have been going really well.  I strongly dislike the networking topic, but I enjoyed the C++ programming class so much that I finished my final assignment 3 weeks early.  It’s encouraging to see that I really do have an aptitude for this field and enjoy the material, as I had hoped.  I’m hopeful that it will lead to a good job where I can thrive.

I’m thankful that I’ve been able to continue working part-time with my autistic client, and I am especially thankful that he got moved back to the best teacher I’ve ever worked with.  Not only is she great to work with, but we’ve started spending time together outside of work as well – it’s so much fun to get to have a conversation with her without the kids interrupting every 10 seconds! I’m also thankful for the opportunity this job gives me to show other kids some love.  There are some really sweet girls in my client’s class, and sometimes we have good conversations at lunch.  They, in return, are a huge encouragement and blessing.  Look at this:

I’m thankful for the awesome time we had in Nashville in September, at the Jars 20 Celebration Weekend.  We got to casually chat with the band, meet other fans (including some people I interacted with online many years ago), have a special concert in the Blood:Water Mission office, tour their studio, and go to the Concert to End All Concerts at the Franklin Theatre.  The guys were kind and gracious as always, and they even put up my photo gift where I could see it when they did the next online concert.  Only The Office Convention weekend comes close in awesomeness.

Jars 20

I’m thankful for my family, who accept and support me in so many ways.

I’m thankful for my best friend, and my godson, and the technology like FaceTime that lets us keep in touch so it’s easier for him to remember me when I finally get out there to visit.

I’m thankful for my sweet, fluffy cat Gandalf.  He makes me smile.

I’m thankful for the many bloggers who have helped me discover my place on the spectrum, understand more about myself and others, and make me feel less alone.

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Perfectionism and Performance Anxiety

I’m frustratingly busy, so I’ll try to keep this one short. But being so busy also has me feeling very anxious. And with the thoughts swirling, I thought it might help to write some of them out.

Just the other day I was talking with someone at work about the concept of “performance anxiety,” that unpleasant feeling we get when someone is watching us do something (or the anxiety leading up to that event).  I recalled what I was taught in school, about how basketball players will practice free-throws until the movement is automatic, like a machine.  That way, when they are standing in front of the crowd and under pressure, their performance is less likely to suffer from the situation.

Today I was thinking about how the social deficits of being autistic can cause an almost-constant performance anxiety whenever I’m around people.  I know that a lot of this, for me, comes from an unhealthy “fear of man” – that is, caring too much about what people think of me, and getting identity/value from that.  But at the same time, I need to know if what I’m doing or saying is having negative consequences.  I have a lifetime of memories of messing up.  I’ve unintentionally hurt feelings, caused people to think I was arrogant (instead of insecure and shy), made assumptions that led to damaged friendships.  This evening, I remembered reading a blog post about social anxiety and autism; I just looked it up, and once again she says so much good stuff I’ll recommend you go read it instead of trying to write my own version here.  For example:

When a person with impaired social communication abilities has anxiety about social situations, they are like a poor swimmer who is anxious about boarding a boat. The perceived risk is real and rational.

-Cynthia Kim, Musings of an Aspie:My Anxiety is Not Disordered

Taking college classes again, I’ve been frustrated by my desire for perfectionism.  I keep reminding myself that missing questions or losing points is an opportunity to learn, but I still want that 100%.  I’ve always been told how smart I am, and that was a big part of my identity – so the desire for good grades goes deeper than just wanting a good number on my resume so I can get a better job.  It means I spend too much time on assignments, worrying the whole time about if I’m doing it right and doing enough.  Like I said, it’s very frustrating.  (Oh, and this “perfectionism” topic could easily be a separate blog post.  Of course, there’s one worth reading over at Musings of an Aspie).


Another area where the perfectionism and performance anxiety are driving me nuts is my photography business.  I’m about ready to call it quits.  I get so anxious before the shoot – will I be able to get the shots they want?  And then there’s the viewing – will they like the shots?  And there’s the sales component, where I have to deal with the uncomfortable topic of money and asking them for it, and I have to talk myself up.  Oh, and the editing.  I spend too much time trying to “perfect” images before I even know which ones they will want (of course, it’s hard for them to know what they want if they can’t see how beautiful it will be in the end).  And even in applying edits I’m constantly doubting myself and anxious.  Ugh.  I do really love being able to give people beautiful portraits, especially of their kids.  I’m looking forward to getting a new career that pays all the bills so I can go back to giving away photography.

Speaking of giving away photography – I’m going to combat the negative feelings by ending with this photo.  At the totally amazing Jars 20 Celebration Weekend in Nashville, I gave the guys a gift.  I took a picture of some of Dad’s vinyl records, with my Jars of Clay albums mixed in.   They liked it 🙂

On Birthdays and Measuring Years

30. 1. 20.

We attach so much significance to our measurements of time.

I recently turned 30.
It’s been 1 year since I realized I have Asperger’s.
Jars of Clay is celebrating 20 years as a band. (Their new album is excellent, btw).

Jars 20

30. I don’t feel 30, of course. I’m not sure what 30 is supposed to feel like. Of course, life doesn’t look the way I expected it to look at 30.

One thing I wanted to write about was my birthday, and how it was an example of what I’ve learned over the past year. Here comes the Aspie problem of not knowing exactly how much back-story to give. . . to be brief, my 28th birthday was very sad and emotional because of a relationship situation. The next year, I planned to have a better birthday. I even had a party for the first time in years, complete with goodie bags!  Some of my favorite people came to visit, and the house got noisy when some family friends were in town and came by also.  But another relationship situation went down shortly after, which ended up tainting the weekend.

So this year I was back to not looking forward to my birthday.  Since the previous two were tainted by guys, I decided to not even mention that my birthday was coming up to the guy I was chatting with online.  Every time I thought about my birthday coming up, and tried to decide what I wanted to do (such as invite people over) I would just want to cry.  My very wise best friend encouraged me to “do something fun . . . like eat ice cream for breakfast, don’t do any school work, and watch HSM3 or Darren Criss.”

I took her advice.  (Well, I saved the HSM3 for the next weekend when she was coming to visit, and I had a different dessert for breakfast.)  I went to my morning work session, then relaxed at home with my parents and watched some movies with them.  Mom made delicious food.  I got a few thoughtful gifts from my family.

My bestie sent me this shirt. Link and Harry are my homeboys.

While some might see my change in behavior as “giving up” or withdrawing, I recognized it as growth in understanding and accepting myself.  Ever since I was small I have loved the *idea* of a party, but the party itself was often problematic.  I have a hard time splitting my time and attention properly when I’m with multiple people.  I have to be constantly “on” socially and concerned about how people from my different circles are getting along.  It can easily get noisy and overstimulating.  There’s the inevitable disappointments (too often I ended up crying in my room at parties) and the stress of opening gifts.  Tangent time!

I hate opening gifts.

I have theorized that this goes back to getting things like Barbie dolls as a child from people who don’t actually know me (like if I invited a classmate to a party and their mom never met me).  Talk about disappointing!  Like most people on the spectrum, I was never good at hiding my emotions and lying.  I know I’m supposed to act happy and grateful when I receive a gift, but that is SO HARD when it’s a disgusting magenta box with an ugly doll inside.  (I used to avoid the magenta toy aisle at all costs; I thought about taking a picture of one for the blog and decided it’s too awful, so I’ll skip it.)  So imagine it – being a little kid, excited to see what new toy is under the wrapping paper, but then seeing the hot pink and feeling seriously disappointed while having an audience – including someone who will feel sad if you show your disappointment, and you don’t want to make them feel sad.  It’s not fun.  And while I slowly got better at acting thankful, that trepidation still accompanies every wrapped gift and every surprise.   (Second tangent – I don’t like surprises. . . unsurprisingly, my relationship with a magician did not end well).

</tangent>

So, instead of stressing about organizing a get-together that would inevitably stress me out, and thinking about all the ways my birthday could be different, I decided to honor who I am and what I actually enjoy, and give myself the gift of a relaxing day of good things.  And I got to have other good things to look forward to, like my best friend and her family coming to visit and the arrival of the not-yet-available LEGO Mini Cooper my parents wanted to give me for my birthday:

LEGOS!

This was one birthday toy that did not disappoint! My inner-child was SO HAPPY.

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

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.

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.

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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.

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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.

Crisis of Faith

For the last several months I’ve been experiencing a deep crisis of faith.  Not my Christian faith, but rather my faith in what I do as a TSS.  For those of you unfamiliar with the TSS position, it stands for Therapeutic Support Staff.  Most of the children served by my agency (and all the kids that I have worked with) are on the autism spectrum, though there are other diagnoses/issues that can cause a recommendation for services.  Here’s how it works: after an intake evaluation, a child may get a BSC, who is a master’s level clinician.  The BSC consults with the caregivers and school (if relevant) and develops a treatment plan full of objectives and interventions.  Then the TSS, a bachelor’s level therapist, implements the interventions (while teaching caregivers/teachers to use them) and collects data and documentation (the bane of my existence).

Some tools of the trade - computer for documentation, a variety of ear protection, visuals, fidget toys, a pencil for writing a flexible visual schedule, highlighter to color in a smiley chart.

Some tools of the trade – computer for documentation, a variety of ear protection, visuals, fidget toys, a pencil for writing a flexible visual schedule, highlighter to color in a smiley chart.

I worked for another agency for a year and nine months before reaching burnout point and moving home, and I have worked for this agency just as long.  I’ve always been really good at my job – at least, especially good at the working-with-the-kids part, because I *get* them and can tell what’s going on with them before most other adults in their lives.  I always figured it was because I have empathy for autistic kids because of my cousins, and because I’m a highly sensitive person myself, and because I’ve studied a lot about autism.  But last summer when I realized I have Asperger’s, I started to not only empathize with and understand the kids but also identify with them.  And in many ways that has made my job much harder.  One day I exclaimed in frustration, “I feel like I’m disguised, helping those adults to oppress my people!”  My mom chuckled, but it’s a real feeling.

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A big component in the development of my Crisis of Faith was reading a few blog posts as I was exploring my own self-diagnosis.

 

[Warning – this post is going to involve a lot of “recommended reading.”  I’ll try to summarize the key idea of each link I post, but they are all worth reading.]
One of the first was “Quiet Hands.”  As I read this post, my heart sank.  How many times have I, following the leads of the adults in charge at school, tried to suppress my clients’ stims?  Sure, I’ve suggested things like fidget toys as alternatives; and sure, most of my main client’s hand movements are accompanied by disruptive sound effects (think Angry Birds; that’s the game he’s usually playing in his head while stimming with his hands).  But I’ve also used this visual:

Which brings me to the next blog, which I think is actually where I saw the previous link.  “On Failing Kindergarten,” by Alyssa on Yes, That Too. I spent all last year, and most of this one, watching the staff in autism support rooms trying to make kids follow these rules.  I’ve felt frustrated with them making a kid sit with his feet on the floor in front of him, when the kid is trying to sit on his foot or sit cross-legged in the chair- like I do.  I’m so uncomfortable with conflict and speaking up. . . if I’m in a situation where I don’t think my advice will be heeded I am unlikely to offer it.  But I’ve tried to muster courage to be a sort of advocate when I can.  In that specific example I did finally say, “I have trouble sitting on these hard chairs; have you tried one of those squishy things they can sit on?”  (I’ve seen them at the school.)  The teacher shrugged it off with a, “We’ve tried everything” (not true) and resumed firmly demanding he sit “right” in the chair, threatening him with the weighted lap pad instead of offering it as a good thing.

Situations like that are difficult, because I am a guest in these classrooms and it is not my place to tell the teachers what they’re doing wrong. . . I’m there to explain interventions that work for my client and model them.   And like I said, I am uncomfortable.  I’m too afraid to say things that will cause discord or bad feelings, since I have to be around these people every day.  I was yelled at once at work while trying to implement an intervention and nearly cried; I was terrified of seeing the person again.  Although I tried to act normally around them I was also very wary.  So I have the internal conflict of watching treatment I strongly disagree with but being afraid of trying to change it.

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Here is an example of what it’s like to *see* what the people in charge do not see when an autistic student is acting out.  Her writing powerfully conveys the feeling of heartbreak and helplessness I often feel in such situations. – “What I Saw” by AutisticChick

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Alyssa
Alyssa
Alyssa
On Failing Kindergarten

I’ve only read a few of Matt Walsh’s posts and I don’t agree with everything he says. But I really liked most of what he says in, “Help, doc, I’m bored by boring things. I think I’ve got the ADHD!”  I agree that medication is over-prescribed, but I think he’s a little too strongly anti-meds (for an example of a family who dramatically benefits from meds, check out the BBC documentary Living with ADHD).
Here’s the main point of this post summed up in two quotes:

What if — this is a big IF — what if people are all, like, different?

Hold on.

Don’t stop reading yet. Seriously, think about it. What if there ISN’T actually some preordained mold of behavior and thought in which we’re all supposed to fit? What if it’s OK for some people to be a certain way, while others are another way, and still others are an entirely different way? What if some people are active, and some people aren’t; some people are creative, and some people aren’t; some people have a lot of energy, and some people don’t; some people are daydreamers, and some people aren’t? What if — again, HUGE if — but what if we tried to find a place for the unique qualities of all men and women, rather than attempting to chemically eradicate entire personality types simply because they don’t gel with our artificial societal constructs?

What if we stopped trying to make our kids “normal,” and instead encouraged them to be exceptional?

and:

Could it be that our kids are distracted because they’re surrounded by distractions? Could they be overstimulated because they’re surrounded by stimulation? Could they have trouble paying attention in school because school is tedious and boring?

I really loved that second quote.

I also read one of his rants about public schooling and homeschooling; again, I don’t agree with everything he says, but he made points that resonated and further weakened my already shaky faith in the public school system.  And let me tell you, I have had the privilege of working with some amazingly wonderful educators.  Ever since I was a child I have had respect and affection for good teachers, and it continues to this day.  From what I’ve seen, the school I mostly work in right now is a great school, at least by the standards of the schools I have seen or attended.  However. . . more and more I’m seeing how it really doesn’t work for everyone.  I see kids falling through the cracks, because even the best teachers are only human and have too much on their plates (crowded classes, heavy workloads, lack of parental involvement, etc).  I cannot emphasize enough how much I respect most of these teachers; I honestly cannot think of a single negative thing to say about my client’s second grade teacher, for example.  But when I’m sitting there trying to get this kid to stop his noisy stimming while the class is taking turns reading, I have to wonder, “Why are we here?”  He pretty much never gets anything out of the lessons in the gen-ed classroom; he learns and works much better one-on-one.  Most of our time in the gen-ed room is spent trying to keep him quiet and on task; if he doesn’t have a specific task in front of him like a worksheet it’s rough.  So why is he there?  To try to learn how to sit still and quiet and listen to group instruction?  That leads to the next question – Why?  Does he really need those skills?  I mean, what kind of additional education is he going to seek in the future, and what kind of job?  When I think about it, most jobs don’t involve the kind of “skills” he’s supposed to be learning in school.  I am all for him spending time with the gen-ed kids, not only for his benefit but for theirs.  We didn’t have any kids like him in my class growing up.  In fact, I have so little exposure to individuals who have labels like ID that when I first started going to a Life Skills classroom with another client I felt VERY uncomfortable around those kids, much to my shame.  But the kids in my younger client’s class – they accept him.  They are willing to help and prompt him and pester him for high-fives.  I’ve seen bright and social young boys give up doing something “normal” with their friends at recess to interact with my client and help him practice things like tossing and kicking a ball – and this without any adults suggesting they do so.  In those moments I feel hope for the future.

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So, what are the next steps?  Well, my first personal step is switching gears and going back to college to study Information Sciences and Technology.  After we discovered my place on the spectrum, my mom encouraged me to look at career fields that would be a better fit for someone with Asperger’s.  I start classes next month and will continue working as a TSS part-time for as long as I can manage doing both.  Another step has been slowly “coming out” at work.  I didn’t make a big formal announcement, but if I’m chatting with someone about a student’s specific behavior I will say something like, “I can really understand why he has a hard time with the noise in the cafeteria.  I started wearing earplugs in there!  I’ve come to realize that if there had been more awareness when I was a kid I would have been diagnosed, myself.  Loud noises like that are overstimulating to me and make me feel really anxious.  Do you think he’d tolerate some kind of ear protection for in there?”  I don’t make a big deal about it, but I want them to know I’m giving advice not just as a trained TSS but as an autistic person.  An also-autistic person speaking for and defending the rights of these autistic kids who don’t yet know how to speak up for themselves.  Which leads me to a third step – promoting true “Autism awareness” by encouraging autistics to raise their voices and NTs to start listening.

 

 

 

Speechless

“Sticks and stones can break my bones, but words can never hurt me.”

Bull****.

There are many words that still haunt me.  Taunts about my weight that started in late elementary school.  Words of social exclusion from the mean girls.  Dismissive remarks from relatives.  A girl I considered my best friend suggesting I just kill myself. (I pretty much remember the exact phrasing of that one.)

I remember talking to a new friend in high school and explaining that my group of girl friends didn’t care what I had to say.  “Oh, I’m sure you’re just imagining things,” he said.  “No, I had the feeling that they didn’t want to hear me, but then they actually said, ‘Schenley, shut up; we don’t care.'”  I thought that was pretty convincing proof that my intuition had been correct.  I don’t remember him having a good response to that.

I recall a period there in high school where I felt like I just couldn’t win.  If I was in a good mood and talkative, they would yell at me for being annoying.  If I kept quiet, they would yell at me for being depressed.  It was only in the past few days that I started to realize the direction of the correlation – sure, sometimes I was quiet because I was depressed, but I think more often I was depressed because I was quiet.

On a recent episode of The Big Bang Theory, Sheldon is telling Amy about his “Which new game system to buy?” dilemma in a very animated and agitated fashion.  Poor, patient Amy just wants him to shut up and pass the butter, and in exasperation feigns interest.  Despite her doing this extremely obviously, Sheldon is oblivious and just gets more enthusiastic.  Sometimes I wish I could be as oblivious as Sheldon.  Instead, I have learned to pick up those social cues of disinterest and annoyance.  And when people aren’t interested, I can generally shut up.  But this comes at a cost.

I’ve started to notice that this constant tongue-biting is truly damaging to my mood.

I’m suppressing my own thoughts and feelings. I’m telling myself they aren’t worth sharing.  When these are feelings of excitement or joy, that is pretty effective at squelching the happiness.

As an Aspie, I have special interests that bring me joy.  I love to spend time on/with these things, I love to think about them, I love to talk about them.  The problem is, other people generally don’t find them as interesting.

It hurts when others aren’t interested in something I’m passionate about.  I mean, if the person is someone you care about, shouldn’t you at least listen out of care for the person, if not the topic?  Whenever someone shows a genuine interest in what I’m talking about I can feel myself light up.  Like when a friend’s husband asked follow-up questions about how paper-pieced quilting works instead of just nodding and smiling.

free pattern available at Fandom in Stitches

free pattern for the “Project of Doom” available at Fandom in Stitches

It’s great when I have someone to share an interest with, when I’m allowed to be excited and they’re excited in return.  My dad and I can rhapsodize about music and movies (and script lines at each other – yay acceptable echolalia), my sister and I can ramble on about our Sims or gush about Glee, a friend and I can quote The Office to each other and even went to The Office Convention in Scranton years ago, etc.  I treasure those relationships and moments when we can be ourselves and share each others’ joy.  There’s even research to back up the idea that sharing joy with others is a good thing.

Other times I keep my mouth shut because I’m feeling down and don’t want to dampen the other person’s mood, or what I have to say is nothing new and I feel like a broken record and feel bad for the other person who’d have to hear it.  I suck at lying, so I just don’t talk.  But that doesn’t help me feel any better.  And in those moments I long for someone to reach out to me and be honestly willing to listen.