Video: Amazing Things Happen

I love this video so much!  It reminds me of My Message to the 4th Graders.  Enjoy and share 🙂

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Mini-Review: M in the Middle

M.

When I reviewed the book M is for Autism, I said I wanted to hear more about this girl who calls herself “M.”  I lost my copy of the book, and when I went on Amazon to buy a new one I discovered the students and their teacher had written a sequel.  I was hand-flapping excited (though I tried to tone that down when I told Mom I ordered them).

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Both books arrived yesterday, and I was so startled by M in the Middle‘s thicker size that for a moment I thought they sent the wrong book.  But no, it’s a longer novel.  I missed the colorful pages of M is for Autism, but they occasionally play with the fonts and type to help M communicate.

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This is what happens when you have autistic girls write a novel about an autistic girl.

 

I re-read M is for Autism last night to prepare for the sequel.  I was a little surprised by *just* how short it is; I think that I was so engrossed in the scenes and M’s mind when I first read it that it felt “bigger.”  I loved it just as much the second time.

I was impressed by the consistency of the character and her voice between the two books.  Our main character and narrator is now in year 8 in England (7th grade, here in the States).  She got her autism diagnosis a year ago, and her wonderful therapist has been helping her understand herself and develop strategies for dealing with her often-crippling anxiety.

I do want to caution those of you who struggle(d) with anxiety.  The authors do an incredible job of provoking empathy for their anxious narrator.  Pretty much any time M was taking deep breaths or using another calming strategy, I found myself taking deep breaths along with her.  I read the book in one day – partly because it was so good, and partly because I didn’t want to drag out my time living in her anxious mind.

We get a fuller picture of M’s life in this longer book.  She deals with INCREDIBLY frustrating adults who do pretty much the opposite of what this poor girl needs, fueling her anxiety and pushing her towards mutism.  She encounters a few people who get her, show her kindness, and help her find her voice again.  She has “friends” who turn into horrible bullies and she has friends.  She has an obsessive crush on an older boy, and wonders if she can have a “normal” future.  She tries so hard to fit in.  She tries so hard to have friends.  She tries so hard to do the right things at school.  She tries so hard to combat her anxiety.  She tries so hard to connect with her family while recognizing she can’t do the things they want her to do to show that connection.  She tries. So. Damn. Hard.

While 13-year-old me didn’t have all the same struggles and experiences, I related to a lot of what she goes through.

Again, the authors share some truly insightful thoughts through M’s words.  Here are a few I made note of as I read.

About her mother (p. 113):

She was delighted when we got the diagnosis. She was reading books and web pages and talked about us going to meetings and then she just seemed to stop.  Like she stopped believing I had autism or maybe when the reality of it began to unfold it all became too difficult.  . . .

But I’ve been carrying it around with me my whole life.  This is my reality, and does she realise how difficult that is?

About trying to “crack the friendship code” (p. 115):

And even though the truth is I love being on my own, I feel a desire to fit in and have friends.  Like it’s part of my purpose on earth.  I’m hardwired to fit in!  . . . I want to be accepted by my fellow human beings, but it really is so much easier on my own, and I retreat back to my little pink room, back to the security of my bed and blanket and the comfort of Skylar, season 5, episode 7.

When her mother suggests she write down how she feels, to let her feelings “out into the world” (p. 169-170):

Is it like letting Bella out into the back garden?  I haven’t got a back door.  I can’t just open a door to me and let my feelings out into the world.  Is that what everyone else is doing? Am I surrounded by other people’s feelings that they’ve let out??  Do I pick them up as I pass someone in town or do other people’s anger or jealousy latch on to me as I walk down a corridor?  And is that why I get so anxious?  I’ve picked up all the dumped emotions everyone else has let out into the world and I have an extra quota of feelings?

While writing this, I recalled watching the video about the Limpsfield Grange School girls (where this book was written).  I just realized that one of the plot points (involving the crush’s photos) was inspired by a real experience of a girl at that school.

I strongly recommend this pair of books – for autistic girls to feel less alone, and for people who aren’t autistic girls to stretch their empathy muscles.  It’s an emotional ride, but they both end with glimmers of realistic hope.

My Message to the 4th Graders

This is a post I’ve been wanting to type up for over a year now.  In 2015, I was working with an autistic boy for the third year in a row.  I was a TSS (therapeutic support staff), which meant I spent a lot of time with him both at his school and his house, working on behavioral interventions and doing lots of documentation. (For a little more detail about my job as a TSS, see the post “Crisis of Faith.”)  He had a LOT of hours.  Over those three years I not only got to know him and his family and nurses well, but I came to know and love a lot of his classmates.

His classmates were, for the most part, awesome.  This was a kid who would have super-scary aggressive meltdowns, but after it was over his classmates would still invite him to play at recess or help him follow instructions in the classroom.

Friends on a field trip

Friends on a field trip

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In the middle of those years, I had another client, up at the middle school.  In his classroom, there was a boy I’ll call “Hunter.” On my very first day, I suspected that Hunter was on the spectrum, too.  (My gay sister has excellent gaydar. . . do we have an accepted made-up word yet for autism-radar?)  Hunter was the kind of kid who had a lot of trouble socially, and unlike my little client at the elementary school, it wasn’t obvious to his peers that he was struggling.  They just sensed Hunter was different, and got annoyed when he’d be bossy or a “know it all,” and socially ostracized him.  It was difficult for me to watch, especially since I was still in that first year of my self-diagnosis, and I was reflecting so much on my own childhood.

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Back to that first client’s class.  I had seen first sparks of middle-school-girl drama forming as these fourth graders headed towards adolescence.  I had seen how the older students were treating one another.  I had watched these little kids be so considerate of my client and the other “different” kids in their classroom, and felt the hope it gave me for the future.  I didn’t want them to lose that.

So, I did something that is entirely out of character for me, and volunteered myself for public speaking.  I must have been inspired by the guidance counselor’s weekly lessons that were supposed to teach the kids emotional intelligence skills (identifying and handling their emotions, showing empathy, stopping bullying, etc.).  She was occasionally busy and couldn’t come do the lesson, which meant the classroom teacher lost that hour of prep time she had been depending on.  One of those days, I suggested I could teach the kids about autism.  Mrs. C loved that idea, so I let the ideas run repeatedly through my head and wrote my main points out on note cards.  I kept those cards in my bag, and the next time the guidance counselor cancelled, I was ready.  Or, as ready as I ever am to talk in front of people.

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It’s been a long time since that day, so I won’t be able to remember it word-for-word, or remember the excellent comments that Mrs. C and the students shared during our discussion.  I wish I had taken notes on those, because the kids really interacted with me.  But here is what I’ve reconstructed from those note cards.

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At my house, we have a Wii, and we have a PlayStation 3.  If I put my MarioKart disc in the PlayStation, will it work?

“No!”

So, my PlayStation is broken?  Or the disc is broken?

“No.”

[I explained that the two game systems have different operating systems.  I tried also making the Windows/Mac comparison that I originally saw explaining this idea, but they weren’t as familiar with computer systems.]

A lot of you have seen me wear earplugs in the cafeteria.  Why do I do that?

“Because it’s too loud.”

But wait. . . if it’s “too loud,” why isn’t everyone wearing earplugs?

[discussion]

So, do you mean we each have our own “too loud”?  We can experience the same thing in different ways?

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In my psychology classes, we were warned that sometimes you learn about something and start diagnosing all of the people around you with that thing – don’t do that!

[I projected the DSM-5 diagnostic criteria for ASD on the board, and tried to give a quick 4th-grade-level explanation of each section, with examples]

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Where does autism come from?

I know that you guys have been learning about “traits” in your science class.

We know that autism can be inherited.  It runs in my family.

Our environment is also going to play a part in how people with autism develop, how bad some behaviors are, how they learn to cope.

Just like every kid.

Everyone has strengths and weaknesses.  Some of you are awesome at basketball, but not soccer.  Some of you are bad at memorizing multiplication facts, but awesome at geometry.  Some of you are awesome at understanding what others are feeling, and being kind when they need it.

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“Different operating system” does not equal “broken.”

That’s what I want you guys to understand about autism.

It doesn’t mean he’s sick.  It doesn’t mean she’s stupid.  It doesn’t mean he’s broken.

He or she has a different operating system than most people.  The way they experience the world can be different, and so they may react differently.

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You guys have been learning about empathy, and how it’s so important.

When you have a different operating system, it makes it harder to understand how another person is thinking and feeling.  Because if you were in their situation, you would not be thinking and feeling that way.

What are some of your favorite smells?

If you see me at a seafood restaurant, I’m going to look disgusted and unhappy.  You might not be able to figure out why – because to you, the place smells awesome and you can’t wait to eat.  But I hate the smell of seafood.

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In my kitchen at home, my mom has always had a little sign by our kitchen sink.  I see it every day.  It says, “Be kind, for everyone you meet is fighting a tough battle.”

I’ve been so impressed with you guys and the other kids in this grade who I’ve gotten to observe and know these three years.  You do so much to be kind and include other kids.  That is really special.  Not all kids are like that.  And I don’t want you to lose that.

Stay kind.

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When I was growing up, I had a really hard time reading other people, and they had a hard time understanding what I was thinking.  I’d feel happy but wouldn’t look it.  I didn’t make a lot of eye contact.  I was obsessed with dinosaurs, Ghostbusters, and Ninja Turtles.  I couldn’t color until all 96 crayons were in meticulous rainbow order.  Before I could read, my mom had to read my favorite TV show’s episode title when it came on the screen, or my day would be ruined.  She was really happy when I learned how to read!  I wore my socks inside-out because the seam bothered me, and I hated most clothing.  Some of these things got in the way of relationships, and made school hard.

Sound familiar?

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I’m 30.

I still wear some of my socks inside out.  I’m a lot better at understanding what other people are feeling.  I still like things to be organized.  I still have a hard time making new friends.

One reason I wanted to talk to you guys about this is that one day you will be 30.  You’ll meet people who have different operating systems.  Be kind.  Give them a chance.  They might make your life more interesting.

Cards I gave the class on my last day as a TSS.

Cards I gave the class on my last day as a TSS.

Lessons from Speech Class

This month I finished my last class for my associate degree in Information Sciences and Technology. It was a speech class.

More accurately, it was a class focused on the “Principles of communication, implemented through analysis and evaluation of messages, with some attention to formal speaking and group discussion.” Unlike the on-campus offering where you take turns giving short speeches in front of the class, this course focused more on analyzing messages. I chose CAS 100C instead of 100B, to avoid having to do group work.  (I’m so over group work. See image below)

group project

This class was a LOT of writing, which translated into a LOT of time spent on it each week.  I’ve been called a “good writer,” but it takes time for me to write.  Especially when it involves the need to read (and sometimes find) scholarly articles that are to be cited in that week’s essay.  In addition to the weekly essays, we had to write and record two 6-8 minute speeches as our midterm and final.

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I was really fighting my perfectionism this semester.  No matter how many times I reminded myself that my grade didn’t matter, no matter how many managers at work (2) told me to chill out and “just pass,” no matter how many times my boss guaranteed the grade would have no impact on my job. . . . I just couldn’t not care.  I tried SO HARD to turn in work that wasn’t up to my personal standards, yet I still ended the class with an A.  The professor even asked if she could share some of my work with the rest of the class as good examples.

Before this class, I had started learning more about the Enneagram, and I was suspecting that I’m a type 1, the “Perfectionist.”  My excruciating struggle with my performance in this class made this pretty obvious.  I’m thinking about doing more investigation regarding Aspergers and the Enneagram.

One day early in the semester, my boss and I got out of the office for lunch.  He could tell I was struggling (perhaps the fact that I was on the brink of tears clued him in).  Bemused, he reminded me that I just have to pass.  I told him the story of the inspirational “Do your best at not doing your best” image on my phone.

do your best

He said, “I have one better than that.  Do your best at the things that matter.”

He then elaborated, talking about the need to evaluate my priorities, and to make sure I’m spending time and effort on the important things, like relationships.  Basically, if I’m getting a lower grade because I’m playing video games, that’s bad.  If I’m getting a lower grade because I’m focusing on doing well at work, and volunteering at church, and investing in relationships, there’s nothing wrong with that.  Even though I had a tough time following my manager’s advice, I’m extremely grateful that he gave it.

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A big revelation came after I received my final feedback for the class.

I had been super anxious about recording the two big speeches.  Like most people, I don’t enjoy public speaking.  But since I was recording this instead of presenting it to live people, that wasn’t the big reason for anxiety.  We were supposed to use an “extemporaneous” delivery for these speeches, having only words and short phrases on our note cards.  That really stressed me out.  Like most people on the spectrum, I can struggle with verbal communication.  I do much better when I have the time to carefully think out how I want to word something.  And when I have that time, I think I do it well.  I like making sure I get the words right to communicate effectively.  That is really hard to do “on the fly,” when I have a time limit in which to speak all of my main points, research, arguments, transitions, etc.

Our professor gave us a good strategy for how to deliver an extemporaneous speech.  We were to write out the full-sentence outline of the speech, then turn that into an outline of key words and phrases.  We could memorize the introduction, since it’s beneficial to have those introductory words “just right,” and it would give us more confidence for the rest of the speech.  But the rest was supposed to be based off of the short outline on our note cards.  She recommended we rehearse from the short outline, starting over again from the beginning any time we faltered and forgot details.  I tried this for the first speech, but as I rehearsed I found that I was really struggling with getting the words right, so I ended up writing way more on my note cards than I was “supposed” to.

For the second speech, I was reminding myself again that I just had to pass the class, which essentially meant I just had to turn in a speech.  Any speech.  Even a terrible speech.  I would still pass.  I had found enough sources to meet the assignment requirements, done a lot of thinking and synthesizing, sorted the ideas into main points, and had written up my full-sentence outline.  I simply didn’t have time to do the full-blown rehearsal to learn the speech, and I didn’t care if I got points docked for the delivery.  So I printed the entire outline on sheets of paper and cut them in half to be more note-card-sized.  That way, I could glance down and see EXACTLY how I wanted to say it.  (As I made edits to the content, I left the original outline file intact, so I could turn in something that was slightly different than what I said in the video, in case the professor compared them.  I’m sneaky like that.)

I recorded my speech two or three times and called it a night.  A few days later, I got the grade, along with this feedback:

“Really good extemporaneous and conversational delivery.”

Wait, what?  I had the whole thing written out!  I thought you said it would be obvious if we were reading from the page? I rehearsed, but in the end I was essentially reading it word-for-word from my printed outline.  How did I manage to fool you?

Then I realized: Oh.  Right.  I’m autistic.

Writing out words before I say them is a coping skill I developed long ago.  I need to call the mechanic to get a few issues looked at?  I’d better write it out.  I’m going to have a difficult conversation with a boyfriend?  I’d better write out some key points, because once the emotions hit I’m going to struggle to remember what I wanted to say and how to say it.

  • For my non-autistic classmates, reading their speech would be obvious.  They wouldn’t sound conversational.
  • For me, trying to speak off-the-cuff from an outline would leave me stumbling over words, pausing awkwardly mid-sentence, and anxious.  I wouldn’t sound conversational.

I was highly amused when I realized that for me to “pass” as an NT giving an extemporaneous speech, I had to use my coping skill of writing everything out.  I then had to fake being spontaneous and conversational in my delivery as I read, which of course is something I have unconsciously been practicing for years!

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To me, this was a good lesson in respecting who I am.  I have to remember that my brain, my struggles, and my skills are not typical.  The path I take to get to a goal will not always look like the path my peers take.  I also learned how fortunate I am to have people in my life, like the managers at work, who care enough about me to give me good advice and moral support when I’m on the verge of a mental breakdown.  Finally, I learned that I’m absolutely done with school for the foreseeable future!

 

Now that the homework is over, I have time for activities I truly enjoy, such as photography.

Now that the homework is over, I have time for activities I truly enjoy, such as photography.

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.

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.

Loneliness


Loneliness, loneliness, it won’t last forever
Happiness, happiness, wait in line
Every time I look in the mirror I’m in the shadow of doubt. . .

All I want is peace like a river
Long life of sanity,
Love that won’t leave too soon
Someone to pull out the splinters. . .

-Jars of Clay, “Reckless Forgiver” –Inland

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I started this post weeks ago, but then I put off finishing it.  It’s a painful topic, and I was having a hard time organizing my thoughts without rambling.  But I don’t like leaving things unfinished, so here I go.

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I’ve been feeling lonely lately.  Not that it’s a new thing; it kinda comes in waves.  I think this latest time was really instigated by having free time again.  For a while I was chatting online daily with a friend, and when that ended it was sad and a hard change in routine, but I became so very busy and stressed that I simply didn’t have time to feel lonely.  I was too busy with my work schedule, and a busy season of my photography business, and the craziness of trying to make Christmas gifts and visit people.  But all of that activity cut off abruptly. . . and although I was thankful to have my down-time back, it also increased my feeling-down time.

My thoughts for this post have been all over the place.  Do I go into the feelings of childhood loneliness?  Do I explore the ways I made friends who lasted?  Do I share the heartbreaking times where I failed to make friends in new places?  Where do I begin with all of this?

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Since graduating from college I have moved a lot.  I moved 7 times in 6 years, in fact.  Have I mentioned that change is hard? (Rhetorical question – I did).   I was hired as a nanny and then had families’ financial situations change, or I moved in with people knowing the situation had to be temporary.  I moved back in with my parents a few times when my work/living situation had to change, because they are awesome and supportive.  Each time I moved to a new place I really did try to meet people.  I’d find a good church and then step outside of my comfort zone to go

to a young adult ministry event, or join a women’s Bible study, or attend a small-group event to join a group.  And I met some really nice people this way. . . but I never made a real friend.  And I don’t know why.  It seemed like most of them already knew each other, had a history, had their own relationships and busy lives.  They were friendly to me, but I never felt truly initiated into the group, and was rarely invited to do things outside of the scheduled event.   And I’ve never known how to get in.

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Looking back, it seems like I needed an insider to pull me in.  Junior high sucked.  I’m sure eventually I’ll write more about bullying, but for now I’ll just say that those years were the worst of my life.  I hated going to lunch in junior high (and I love to eat), but I didn’t know how to change where I sat.  Then one day my badminton partner in gym class invited me to sit with her at lunch.  I long referred to her as “my angel” for rescuing me in that way.  By inviting me to eat with her, she provided me with the “references” I needed to get in with a new group of girls.  This group (though a bit fluid over the years) remained my social group at school until graduation.  While far from perfect, we did share a lot of fun times, and for that I am thankful.  In fact several of us got together for a private “un-reunion lunch” 10 years after graduation (I had *zero* interest in attending my class reunion); I truly enjoyed seeing them again after so many years.  Yet at school, especially at the end, I often felt lonely, even within this group.

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I’m not really sure at what point in my life I started to feel different.  I felt different from the other girls because I was a tomboy.  Everyone always called me “smart” and it set me apart – when I got older it made me sad that most people would sign my yearbook with something like, “You’re so smart!” instead of something about being friends.  In high school I felt different because I wasn’t dating (not my choice) or interested in partying (my choice based on faith).

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I loved the times I had a best friend.  If I didn’t, or if they weren’t around, I always dreaded the times at school where we were directed to pick a partner or group.  I knew that if the number of friends wasn’t right (3 of us and it was 2 to a bus seat, for example) I’d probably be the one left out.

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In the collection of stories/essays/poems Women from Another Planet?, Jane Meyerding tells a story that really resonated with me.  She writes about going to Girl Scout Camp one summer, and how she participated and enjoyed every day there.  It wasn’t until the overnight camp-out that she realized something:

The other girls had become friends with one another.  Alone there, with no adult present to direct us, they chatted and whispered and laughed and interacted with seamless ease.  How did they know what to say?  They weren’t talking about anything, and yet they talked constantly.  My conversation was limited to specific subjects, not including anything as nebulous as girltalk or smalltalk.  Moreover, they seemed to know each other in a way they didn’t know me — and I certainly didn’t know them.  I had been with them as much during the summer as they had been with each other.  I had done everything they had done (as far as I could tell). And yet I was a stranger there.  The only stranger in the tent.  I realize now that one or more of the other little girls in that tent may not have been happy and socially successful.  But all of them knew how to put on the act.  They may have felt lonely.  They may have felt inadequate.  But they knew–even at eight years old–how to behave in a social situation.
(p 158, 159)

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It’s painful to not understand why I’m not accepted as a friend at times.  The people who become my close friends all tell me I’m a great friend, but most people must not see what they see I guess.  I remember one time (that I will keep intentionally vague).  I was in a room with a girl I thought I had a good relationship with, and she stormed out of the room appearing very upset.  I had a feeling she had gone to talk to girls in another room of the house, and since I had a question for one of those other girls I went over several minutes later.  Sure enough, the first girl was there, and it was clear she had been crying.  Later she mentioned it within another group context and I asked about it, and she explained she had fought with someone.  I never knew why she chose to seek out the other girls instead of talking to me, since I was right there.   But it hurt.

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On page 30 of Aspergirls, Rudy Simone says:

We flourish much better in an environment where the emphasis is on academic achievement and not socializing.  Of course we need to learn to socialize, but through shared interests with like-minded individuals, not by being thrown to the lions.  Emotionally, we require an atmosphere of tolerance and non-judgement.

This was definitely true for me, going to Grove City College.  People were actually nice to me.  It was so weird, but wonderful. And one of the best things that happened there began on the first day.  The college organized “mentor groups” to help us get settled in and meet each other.  I entered that first day with the determination to try harder to make friends, and I was acting much more social and outgoing than was normal for me.  But when I sat down in the grass with my mentor group I saw an individual who looked as shy and uncomfortable as I truly felt.  We were both wearing Christian rock t-shirts, which gave me a chance to strike up a conversation.  I put forth a little extra effort to initiate with her.  It didn’t happen for a while, but she became my best friend, and still is after a decade.

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Like a lot of people on the spectrum, I often feel more lonely when I’m surrounded by people than when I’m truly alone. I think it’s the seeing the NTs interact and feeling so unlike them.  I read one person (I’ll try to find the reference) describe it as feeling like being separated by a pane of glass, being able to see the interactions and not really join them.

I get frustrated when I hear NTs generalize that autistics are “anti-social” or “loners.”  In fact, I heard someone who works in my field say, based on her experience with an autistic close relative, “They don’t really make that ‘human connection’ with other people.”

In his book The Reason I Jump, Naoki Higashida writes,

The truth is, we’d love to be with other people.  But because things never, ever go right, we end up getting used to being alone, without even noticing this is happening.  Whenever I overhear someone remark how much I prefer to be on my own, it makes me feel desperately lonely.  It’s as if they’re deliberately giving me the cold-shoulder treatment.

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A few weeks ago I was riding in the car with my family.  Sitting in the backseat, I gazed out the window at the dark wintery scenes.  I noticed a feeling that I recognized as familiar.  As I saw each house, with warm light seeping through the curtains across the cold darkness between us, I felt pangs of longing.  I wondered why.  Maybe it was a metaphor created by my soul.