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.

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Blue Memories

yellow tree

It is a lovely fall day (though rather windy), so I went out for a long walk.  I’ve been watching a lot of TV while editing photos, so I switched the podcast for some instrumental music to better listen to my own thoughts for a bit.  I saw the plentiful leaves on the ground, and smiled as I remembered playing in piles of leaves in the backyard when I was little.  But then the musty smell hit my nose, the smell of decaying bits of life that will be no more.  And I was overcome with sadness.

 Joy looks at a now-blue memory with Sadness

One of the most poignant devices in the Pixar movie Inside Out is how Sadness touches happy memories, permanently turning them blue.  I feel like that’s been going on a lot lately in my own brain.  I’ll scramble for those bright yellow orbs, trying to cheer myself up with happy recollections, only to feel the sting of recognizing that those times are not coming back.

I’ve been feeling painfully nostalgic a lot lately.  A young friend and I have been watching Girl Meets World (and Boy Meets World).  That stirs up a lot of stuff.  While I certainly don’t miss the angst of crushes, I do miss having a group of friends to hang out with all the time, and the hope I had that someday a crush could like me back.  Then last night I was chatting with another young friend, who recently got an N64.  I happily reminisced about playing N64 games for hours on end with my guy friends. . . and I miss that.

I don’t look at those years with rose-colored glasses.  My high school friends and I promised each other we would never forget how awful it was.  I do not miss the emotional rollercoaster, the bullying and teasing, the frequent depression, the pain of unrequited interest and emotional attachment.  I do not miss being told I should just go home and kill myself (spoken by a best friend) or watching my friends stray down sinful paths, and the subsequent loneliness.  I miss hanging out with friends every day, the Sundays at my pastor’s house that got me through the rest of my week, obsessing with my best friend over our favorite things, sharing inside jokes and favorite quotes, late nights talking, sharing packs of SourPatch Kids Watermelon candy at the movie theater, sledding down the hill and staring at the stars.  I miss the times I was filled with hope.  I miss the more certain faith I had those years that one friend in particular was in my life.

We met October 3rd, 2001. (That’s another reason fall is a hard time for memories.) He rescued me from unpleasant conversations on a school field trip, and on the bus ride home he looked at the changing leaves and explained to me why fall is his favorite season.  There is so much I miss about those years, even though they were also filled with pain.  I wouldn’t want to go back. . . but it’s hard not having those good things anymore.

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

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.

Mini-Review: Born on a Blue Day

Born on a Blue Day by Daniel Tammet is one of the books I requested for Christmas. Reading the first chapter, my thought was, “Wow, this guy’s brain is so different than mine. I really can’t relate to what he’s saying, but it will be fascinating to continue reading about such a unique mind.” A few pages into the second chapter, my thoughts changed to, “Wow, I really relate to this guy!”

This was a wonderful read. To me, one of the many reasons is he’s in my age group- he was born a few years before me, but wrote the book when he was slightly younger than I am now. I enjoyed having that common ground. I was amazed by how eloquently and understandably he explains what it’s like inside his extraordinary savant mind. The first chapter was a bit awkward to get through, but reflecting back on the entire book I believe it was exactly the right choice – it sets the stage that this young man is *different*, which makes the later moments so meaningful.  He’s not only brilliant, but incredibly brave.

One thing that struck me early on was how blessed he was to have his parents. They seem like those unsung, everyday heroes: the parents who love their children unconditionally, respect their unique needs, encourage them to take baby-steps out of their comfort zones, and make sacrifices to help them succeed.  That’s one of the things Daniel and I have in common.

Near the end of the book he describes his experiences filming this documentary, Brainman – I can’t wait to watch it!