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.

 

 

 

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“You make me feel disabled. Yes, you.” by Pensive Aspie

“You make me feel disabled. Yes, you.” by Pensive Aspie

I’m typing this and I haven’t even finished reading the post – I like it that much.

 

My words can express an agreement and hide my dislike for certain things, but my body language is almost incapable.

Yep.

Even large family gatherings with people who love us can make us anxious. When you dismiss our anxiety with a wave of your hand and a roll of your eyes, you say our feelings don’t matter.  Your dismissal of my feelings increases my anxiety because I feel I have disappointed you. I feel like I cannot do anything right.

YES.

Because sensory issues play a big part in our lives, we often prefer specific foods.  Forcing us to try new foods and chastising us if we don’t proves to me that you don’t respect my boundaries.  I am an adult.  I know what I like and what I don’t.

THIS.

I finished reading it and wanted to shout, “Amen!” and show it to everyone I know.  Here’s my first step:

http://pensiveaspie.wordpress.com/2014/04/19/you-make-me-feel-disabled-yes-you/

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.