This Sunday night I got all the way to rumble, almost going full meltdown. I decided to make a TikTok about it, because I felt it was important that people see what it looks like. This is not a tantrum. This is not a fit. I am NOT in complete control of my mind or body at this stage. What little control I have I am fighting my instincts to exert.
In the video you can see that I’m having problems with making clear concise sentences because my brain is starting to fritz out. My eyes are all over the place. If someone had wanted me to make eye contact, it would have been disastrous. I am literally fighting an urge to run or flail or punch or kick or just find someway to get the built up energy I have in my body. If someone had tried to hug me or hold me I would have beat the crap out of them because at this point touching me would trigger the full meltdown and I would have NO control at all. All my emotions were bubbling just under the surface of my skin, and it would have taken just one more thing to set it completely off. So I removed myself from the situation so I could keep my family safe.
To be clear. This is not fun, and just trying to keep the small level of control I have in this instance was exhausting. I am still feeling the effects days later. I was rather harsh to my family in the moment. It was not pretty, and I did have to apologize afterwards for something they know I can’t really control. But I felt it was important that I remind them that while they did trigger the meltdown with the water leak, I was not really mad at them. The situation was out of control, and they were in the crossfire. They have both had meltdowns as well, so they understand.
Maybe the woman filming VS-Karen did trigger her anxiety because she realized she was going to be held accountable. That’s theoretically possible…. I’m no psychiatrist or therapist, but she did seem like she was in distress after BEING CAUGHT DOING SOMETHING WRONG.
But does it excuse the people around her telling the woman she was attacking to just back off and cut it out? What if that had been me having a meltdown due to something unrelated. What if the police were called because some little Mexican woman was “having a tantrum’ in the middle of a store? Would the patrons have been as nice? Would the police? What I were darker? What if I were darker and male? I’m not linking to the examples of what happens in that respect. You can do that by googling “autistic man shot by police,” you don’t even have to add “black.”
I don’t want sympathy. I don’t want people to feel like they have to be careful around me because there’s a chance I could get overwhelmed and then it’s an issue. If you feel like you want to swot up on what to do in case someone has a meltdown, you can find a really good resource here. But let me take the most important bit out for you….
We know ourselves pretty well, but sometimes it’s unavoidable. Most of the time (as adults) we’ll try and remove ourselves from the situation to prevent possible issues. It’s a little harder with kiddos, but if you notice the signs of a meltdown coming on, try and help them out. Until law enforcement has better training dealing with these types of situations, they are unlikely to make it better, so maybe don’t call the police unless the person is a danger to other people.
Give the person time alone to let the meltdown run its course if at all possible. Make sure you show them respect; remember, a person in meltdown is feeling trauma in losing control of themselves. They know it’s not what “normal” people do, and it is embarrassing, frustrating, and horrifying. If you can minimize adding any negative input, try to. It is okay if you yourself feel shock or horror, just do not show it.
And most of all, don’t think that this is something that is “normal,” for us and happens every time there is a change. Generally, that’s not the case. But it is something that can happen. We just hope it won’t.
Have you watched Hannah Gadsby’s special Douglas on Netflix? It’s wicked smart, and has a really good section on the set dedicated to what it is like getting a late diagnosis of Autism, and how that makes confusing episodes in childhood make sense. In particular, there is a section about a box, and a penguin…
I think all autistic people have a moment like this. Where you find yourself at odds with someone who expects you to make some sort of leap of logic that just doesn’t make sense. It might be trying to figure out how you’re related to a box — or how a penguin is related to the box — or it might be a teacher deciding that they are going to make their own rules outside those of the school.
If schools were prisons, Primary School would be county lockup
I spent my primary and middle school time in parochial/private school. And I am very intentional in my wording there, I mean it to sound like a prison sentence because it very much felt like one at the time. Elementary wasn’t too horrible, but because I was one of the GT kids (and a year younger than everyone else, and TINY) I was a frequent target of bullying. This came to a head in fourth grade when two events happened:
An incident on the blacktop where a boy who had been held back a grade decided to up his bullying by knocking me on my ass with a basketball, which resulted in road-rash on the back of both my thighs and a “light concussion.” I responded to this violence with a swift kick to his head… except his crotch got in the way. I got a one day vacation (and monkey-blood all over my legs) and he got in-school-suspension for a week. The nuns agreed I was acting (mostly) in self-defense.
The end-of-school party where I brought my record player and records and discovered that I did NOT have a good sense of what was “popular music.” To be fair, my parents listened to the oldies station, and did not really like new-wave music, so I was left behind pretty hard. My mom, in her infinite wisdom, had slipped a couple of her/dad’s records in with my “baby records,” so the day was somewhat saved. But I never forgot the feeling of having an entire class laugh at my stuff.
But I would say that primary school was more like county lock-up… middle-school was a freaking state run prison that was overrun with gangs (cliques) and abuse from the handlers (mostly secular, actually). I was not equipped for dealing with this level of hell. I’m sure that for the kids that had been at the school their entire primary sentence were okay. They knew the rules, they understood the hierarchy. I came in at 6th grade (because my primary school was sold to developers, it is now a strip mall) and had NO history. I was already at a disadvantage.
He doesn’t get a name
But my Penguin Moment came in 7th grade. Our school had a policy for 6th through 8th grade that progress reports were given to all students who had a 76 or lower in the class, but only those who were failing (lower than a 70) were required to get a parental signature. I rode that pony all three years I was there. Only once did I have to get a progress report actually signed, and it was in religion class (where I frequently argued with Sister Kathleen). Now my English teacher, who I will not dignify with a name, felt that all progress reports—regardless of the grade—should be signed. While he considered this to be a keystone of parental involvement, I understood it to be theatre. If the student wasn’t failing, there would be no review of the grade… just a simple signature and a “why did you bother me with this?”
So when the first progress reports were sent out, I didn’t get mine signed. I had an A in the class, and it was not policy. My parents would be annoyed w/me presenting them with something to sign that was not a permission slip or a “your kid is in serious trouble” note (which I never got). My grades weren’t terrific, but they were high enough to keep me in the advanced classes and out of notice of the teachers for the most part. Except religion class… but we’ve already touched on that. So at the end of the week, my English teacher noticed that I had not turned my progress report. He addressed me in front of the entire class (I sat front row, all the way to the windows) and asked why I thought I was better than everyone else who had turned theirs in.
Now, under most circumstances, I would not argue with a teacher. But this was dumb. I knew it. He knew it. The class, for all their “oooooooh”ing knew it. So I answered, “the school policy says that only failing grades need a parent’s signature. I’m not failing.” I don’t know what this dude was expecting as an answer, but that was NOT it. “MY POLICY,” he shouted, “is that all progress reports are to be signed.” I thought about it for a second, and asked for clarification, “so what you’re saying, is that your class policy is more important than that of the school?” The room got deadly quiet. I wasn’t “being smart,” or “mouthing off,” I was asking an honest question. Because that did NOT make sense to me. It would be like a city ordinance trumping state or federal law. But that was not how he saw it. I watched the color drain from his face to be replaced by a strange purplish red. In three strides he was directly in front of my desk, and grasped both sides of the writing surface.
In seventh grade I was wearing MAYBE a size 10 clothes and pushing 70 lbs. I was very, very small, but I also didn’t scare easily. Something about sending a bully to the hospital to have his testicles placed back outside his body had told me that I didn’t need to be big to fight back. And, I had no reason to believe any harm would come to me. Our school didn’t use corporal punishment, and I was already a frequent guest of the Vice Principal thanks to my Religion class and Sister Kathleen. I didn’t see the danger any more than I understood why I couldn’t ask for clarification on a statement without calling a teacher’s authority into question.
It was over before I knew it, but it seemed to last hours. While yelling semi-incoherently about how his “RULES WILL BE OBEYED,” he punctuated every word by picking up my desk (with me in it) and slamming it back on the floor. The final expletive was emphasized by tossing the desk (with me in it) against the wall. I landed mostly upright, but hit my head on a shelf. He then picked up my purse/knapsack, and dumped EVERYTHING on the floor screaming “YOU WILL FIND YOUR REPORT AND TURN IT IN TODAY” before storming out of the classroom.
I should mention that no one liked this particular teacher. He was a strange person who had a habit of spraying English Leather and Polo into the room’s air-conditioner, making it damn near impossible for me to concentrate in that room. He also had a habit of calling students various adjectives for “stupid.” In the winter, he wore a full length grey fur coat, and woe be it unto anyone unlucky enough to get that thing dirty in ANY way. He was not beloved, loved, or even liked. He was almost universally loathed. But he got good grades out of this students, and everyone who took his class was assured a high grade on the TEAMS the next year in the Reading section. So the administration tolerated him, regardless of his… eccentricities.
The silence following the attack was deafening. I didn’t cry. I didn’t scream. I just sat there, and looked at the mess on the floor. Everything I owned on full display: colored pencils, a sketchbook, several Lisa Frank folders… as well as several loose maxi-pads and clear Bonnie Bell lip-gloss. All on the floor mixed with papers and hair-clips. I swallowed hard, and righted myself in my desk, and then stood up. Everyone in the class was looking at me, I could feel it, but I kept my eyes on the maxi-pad… just sitting there in the middle of the floor. Slowly I knelt down, and began to put everything back in the bag. After a few minutes, one of the other outcast girls got up and helped me organize some of the stuff that had rolled under other people’s desks. Other students began to look around to see if anything of mine had landed by them and silently passed the erasers and pencils to the front, and then over to me. No one said anything. No one offered comfort, or even commiserated that it was a crazy thing to happen. After a minute, I found the report, unsigned, and crumpled.
I turned to the boy who sat next to me, and asked him for a pen. I didn’t feel like digging in my bag. “What are you going to do?” he asked. “I’m going to give him the report,” I responded dully. “that’s what he wants.” “But your parents didn’t sign it.” “Well, he didn’t say that it had to be signed by my parents,” I replied, smiling weakly. “I’m still right.”
And with that I signed my mother’s name to the report, and placed it on his desk. I made no effort to smooth it out. He could have it, with all the wrinkles and stains. After a few minutes, the teacher came back in reeking of cigarette smoke and what I recognized as whiskey. He walked to his desk, looked at the report, and back to me.
“well, now,” he said, “was that really so hard?”
And we went on with the lesson for the day. We all pretended nothing happened and when the bell rang we all filed out for our next class. I had a headache as a result of hitting my head, and in my next lesson (gym), I asked if I could go to the nurses’ office for an aspirin. Sister Angela could see the slight bump on my head, and looked at me questioningly, but I just asked her again, with a note of pleading in my voice, “please, my head is hurting, can I go see the nurse?” I could feel her looking at the other kids over my head, and later one of my friends told me that no one made eye-contact with her. They all carefully looked away. “Okay,” she said, “go see the nurse. You don’t have to dress out today if your head hurts.”
I didn’t cry until I was in the nurse’s office. She assumed my headache was very bad, and called my mom to make sure I could take a Tylenol. “She must be in a lot of pain,” the nurse said, “she’s crying.” My mom asked to talk to me and asked me if everything was okay, if I was just crying from my headache. I could have told her. I could have said something in that moment and maybe she would have done something. But i didn’t. Because somehow I knew what had happened was just par for the course for me. But I didn’t want to interrupt her day, or my dad’s day. So instead I forced myself to stop and said, “I think it’s my sinuses. Sister Angela won’t make me go outside, so I should be okay. I will see you at home.”
And that was that. I went back to class, sat on the benches and pushed everything down all the pain and the hurt and the need to cry. I was confused as hell as to what had happened, but I understood one thing. Adults could push me around, could bully me, could hurt me, and no one would do anything. Because I was the weird girl. I knew that the teacher wouldn’t have dared to do that to one of the popular kids, or one of the kids that wasn’t on scholarship. I knew that it was okay because I was different and the kids wouldn’t say anything to anyone else. It would all be kept internal to the students as one more thing that happened to the weird girl. I knew whatever hope I had previously of being somewhat accepted was now gone. An adult had validated their assessment—I was wrong somehow.
The rest of the year was spent in relative isolation. I signed every progress report for that class with my mother’s name and it was never called into question. I knew it wouldn’t be. He didn’t really care that she knew how I was doing in class, it was about control. But to this day, I can’t stand the smell of English Leather. It makes me violently ill.
And now, because I don’t want to end on a total downer. Here is Bandicoot Cucumbersmaug not being able to say the word penguins…. a LOT.
And then it was time. And I got dressed in my pretty green dress, and I wore my rainbow shoes… and put on some makeup and TINTED glasses. Brad came with me, and sat in the audience. Brit-brit mic in place, I was lead to the stage, and awaited my introduction.
And began talking.
And we had a post interview on the Texas State TEDx Instagram page while I was still flying high from the talk.
And… then we waited for the videos to get processed… which took a lot longer than we thought it would because of the STUPID TEXAS ICE STORM… and eventually… it was on YouTube and I shared it with everyone I thought would want to see it.
Nothing huge happened.
I’m not internet famous.
I posted the video in Reddit and Discord in the Autism groups I originally polled to get some feedback, and got some good constructive criticism.
I didn’t “win TEDx,” nor did I get my requested audience with the First Lady.
I’m still working at the University.
I finished the JEDI (Justice Equity Diversity and Inclusivity) training and got my Mental Health First-Aid certification.
I also joined the Advocates for Neurodivergence at Texas State (ANTS) group as a mentor/ally (since it’s a student group) and offered my office as a “safe space,” for when people might need quiet/dark. Because I know that sometimes you need that, and we don’t have a lot of those places on a busy campus.
I put off applying for a PhD program and getting my doctorate for a year, until I figure out my life post-pandemic. But I still kind of want to do it. I really missed the research and writing. It scratches an itch in my head that I just can’t get to otherwise. Even so, I want to get at least one kid graduated from college before I start doing my own thing.
As you might imagine, researching autism when you are yourself autistic is kind of a strange thing. But I jumped into the research pool with every intention of plucking only the best bits of research to use in my talk. And… ended up with WAY too much information to do in a 10 minute talk.
The TEDx peeps at our university assigned me a “coach,” who would be helping me with culling down my talk from the one hour lecture I had planned to the expected 10 (or so) minute talk. Mark was (and is) wonderful. A professor in the Communication department, I fully expected to be told to tone down my personality and be more academic. I WAS MISTAKEN.
“You need to show MORE personality!” He would exclaim, “that’s why we loved your video! Who starts a talk with ‘why have mild autism when you can have SPICY autism?‘ YOU, that’s who!”
“I’m not sure you know what you’re asking for…. I can get really animated when I’m excited about something.”
“That’s what we want. It’s easier to tone you down than get you to move more. Use those hands! Keep that deadpan humor! It’s so good; it’s authentic.”
Mark-to me during the practice sessions
Eventually, I got the hint and became more comfortable in my talking. Because I was essentially immersed in books on the pedagogy of teaching online as well as the needs of people with disabilities in a classroom setting, I only needed to reference my slides when I was directly quoting. My personal favorite….
I was forced to condense some of (what I considered) to be more important facts, like the timeline of accommodations for students with “special needs” within federally funded schools, but I was able to stress that the changes that stemmed from the first few cases where student’s families had to sue the school districts for access… had only begun in my lifetime. And in reality, it’s only been since I graduated high school that real and meaningful change began to exist in education.
Because of Covid 19—the whole point of the talk—there was no audience. Not only that, we had to use air-cleaners between people to ensure that everyone in the room (and we were severely limited on that) would be safe. This meant that even though we, as speakers, would still be expected to play to the house… there was no house*. Instead, we would talk to our plus-one as well as a spattering of people taking pictures, filming, and of course… our coach.
The rehearsal was the first time we, as speakers, got to see the space and use it.
You ever do something that is SO big you don’t know how it happened? Yeah, I did that.
So I got an email that was sent to the entire school… asking for people to apply for our university’s TEDx talk. The topic was “access.” Coincidentally I had just been talking to a friend of mine about how my kids—who are both spectrum—were faring at college with the move to online classes. The move online had actually helped with my oldest kid because they were able to go back to lectures that were now online as well (a bit of ADD as well). I also noted that my youngest was taking the option to go almost exclusively online when they could — often working more at night when possible. It intrigued me. So I conducted an unofficial poll online (Reddit and Dischord) where I asked ND peeps how they were faring w/the ability to learn at home. And after the initial change, it seemed to be going fairly well… and I wondered.
What if the ability to learn in a comfortable environment (where they could control the lights, the sound, the everything) was actually HELPING neurodiverse students?
I quickly threw together a proposal video and sent it off to the TEDx group not really expecting anything to come of it. After all, with everything else that was going on right now, who would care if a few students were benefiting from distance learning? ND students are (largely) an invisible disability, and I knew from experience that some faculty even thought of having to put accommodations into their classes as a nuisance. But to my surprise… I was asked to create a TEDx talk…
I have now been working from home for over a month. I know that there are people that are missing the company of other people, and the comfort of having a dedicated workspace — but I kind of like the solitude. Such is the life of an introvert.
Storytime: In 1985, I was 12 years old. Because my father worked at the church, and I was pretty much there all the time, it was determined that I would attend the National Christian Youth Conference with other youth from the area (read: nearby Catholic churches). This meant participating in fund-raising and going to meetings, etc. All the other youth participating were in their mid-teens. I was basically the kid sister that was being forced on them.
Somewhere on the road to Colorado (we were on a bus), we stopped for the night at a motel that happened to be across the street from a movie theatre. After a LOT of begging, we were given permission to go see a movie if we were back by curfew. There were only two movies that met the criteria: Red Heat and Beetlejuice. Now, all the cool kids went to see Red Heat. It was Arnold and Jim (the poor man’s Belushi) in their heyday, making the most of the red-scare. I had no interest in the movie, but no one else wanted to watch Beetlejuice. As I was preparing to go back to the motel (rather than face the indignity of being a solo 12 year old watching a movie by herself), Marcos Hemmingway walked up and offered to see the movie with me.
Marcos was also a bit of an outsider on the trip, but rather than being too young, he was just a little too old. He made the age requirements for the conference (barely), but seemed to be ages older than his 16 year old counterparts. He had already made the older kids “play nice” with me a few times–since they had no desire to “babysit” the weird kid, so I was fairly comfortable with him.
“Let’s watch this movie,” he said, “that other movie looks like it’s shit.”
I was thrilled and a bit smitten. “Okay!”
So we watched Beetlejuice, and it was glorious. Tim Burton before meeting Johnny Depp! Michael Keaton at his craziest! Ingenue Winona Ryder at her teenage spookiest! And Harry Belafonte music! We danced out of the theatre singing Day-O and Shake Senora. The other kids came out of their movie several minutes later disappointed. Apparently… it was a shit movie.
I was okay with being by myself that trip. I intrinsically understood that I wasn’t a cheerleader, or an entertainer, or someone who needed attention all the time. I sat on my own for most of the trip, listening to my walkman, or reading. If not for Marcos, I would not have seen one of my favorite movies of all time. Or decided at 13 that I just wanted to dress like Lydia Deets because it was easier to match all black clothes. We didn’t know at the time that I was autistic — just that I wasn’t like the other kids. They didn’t exclude me… but they also didn’t go out of their way to include me. I understood that, and instead went about being comfortable by myself even with people around me.
And here we are.
I do miss being around people that I like to talk to, it’s not quite the same chatting over the various platforms given to me by the University. But I can still reach out to them if I feel like I want to say hi, or see what they’re up to, or even share an interesting article I read.
My “office” is a corner of my room where I’ve set up all my electronics. It’s perhaps a little too close to my every present and beckoning bed, but it works well. Indirect light is all over the room, and my cats are asleep behind me most of the day. Most of my problem stems from the lack of routine in my day. I like things structured, and not having the structure of work, and seeing people leaving for lunch, or going to teach yoga, or whatever I was used to doing makes me uneasy and a little anxious.
It would probably be easier if I had all the fam here, but due to my father-in-law breaking his leg (and limited bandwidth) it’s pretty much just me and my youngest–who is also spectrum. We talk to each other over Google Hangouts and our Google Home speakers, since we’re on opposite ends of the house. It works out pretty well, honestly.
I’m just not sure how this is going to work out when we’re encouraged to “go back to normal.” I guess it’s because I’m strange and unusual.
Twenty-three years ago I stood in front of my family and friends on an unseasonably warm day and married my husband. I had turned twenty-three two months (and a few days) previous, and I had never been more certain of a decision in my entire life. I had been out of high-school only about four years at that point… and I wasn’t even done with my college degree. But I knew what I wanted, and I knew that Brad was the one.
Most of my friends that are my age have kids that are much younger than my kiddos. Their oldest children are just starting high-school while my youngest is getting ready to head off to college. Many of them met their spouses while in college and married them after graduation… they waited to have kids, they waited to have money… they waited to be certain.
A lot of my friends from high-school jumped straight into marriage. Some by choice, and some to “do the right thing.” Quite a few have kids older than mine. Some of them are even grandparents! And a lot of them are no longer with that spouse. It’s not particularly surprising. So few people actually know themselves or what they want in their late teens and early twenties. Honestly, I think it’s our generation that came up with the idea of a “starter marriage.”
If she knew what she wants..
I took Brad out on our first date. It was a “thank you,” date for helping me move out of my dorm room in a hurry (it’s a LONG story) and into an apartment. Three people helped me that day, and I took the other two to dinner that night. I had to wait to take Brad out because he had a previous engagement scheduled.
Do you know that song by the Carpenters? The “why do birds suddenly appear?” song? I knew I was going to marry Brad that night. We were sitting at Palmers, making small talk about something, when I heard an audible click inside my head. Like a key moving the tumblers in a lock, there was a click, and I knew that he was going to be the one. My mind was pretty well made up. My dad likes to tell people that if I’ve made up my mind, there’s no sense in arguing–and it was clear that my mind was made up.
And 20+ years later, we’re still together. We’re not perfect, but we’re perfect for each other. We complement each other well, and we get each other’s humor. There are still little inside jokes that are only ours—that we refuse to explain to the kids—so we still have a private language we can share.
I mean, I like him. I guess I’ll keep him around a bit longer… see what happens.
When I was in Catholic school (which was a LONG time ago), we used to run through scenarios in our religion class where we would be confronted with someone sinning.
“WHAT,” the religion teacher would ask earnestly, “If you saw someone stealing candy at the store.” We would gasp in horror–that’s a COMMANDMENT. “What should you do?” she would prompt–looking across our upturned faces “what is the right thing?”
Some kids would be confrontational about the situation. “Tell them to not steal!” a particularly judgmental child would yell. “Tell an adult!” would offer another (a known snitch). Others were more spiritual. “I would pray for them, that they would make the right decision,” one of the more annoying girls would say, putting her hands in a prayerful position A few were pragmatic. “Let them, they’re the ones sinning. If they go to hell it’s their fault.” “Why make a scene? Just tell security.”
I never answered. Partially because I felt like it was a dumb question. We all knew the rules, and we all knew that there were consequences for getting caught (either here or in the next life), and free will was free will. But mostly it was because I had learned over time that being confrontational with people breaking the rules was generally frowned upon. It was another, unwritten rule that all children seemed to understand after a few missteps. I was never going to be the girl yelling at people trying to get them to change their mind about something. I was not meant for evangelism.
This space for rent
And yet… I found myself feeling very strongly about things. I would attend rallies and protests, but I was never getting in anyone’s face about it. I admired those people, but it was not for me. It felt fake and forced.
Not to say that I wouldn’t get in someone’s face if it was something that I was directly involved in. I would place myself in between people fighting with the ease of someone fully trained in disarming combatants. I would quiz teachers on school policies and our rights as students if I saw them harassing a friend. As I grew older and had children, I would stand toe to toe with teachers, vice-principals and principals and back them up if they so much as breathed wrong on either of my children. Letters and emails to superintendents and school board were commonplace. And God help them if they insinuated I was incorrect, because I always kept receipts.
But ultimately, I was not made to be someone who argues with people on the internet. So I came up with another plan…. tee-shirt ministry.
See, there are many spiritual gifts — and every person has different gifts. And while the list I know comes from the Christian bible, and there are some gifts specific to those following the Christian path, there certainly seem to be a lot of “common sense” gifts on the list…
Now, I know myself fairly well (I’ve known me my entire life, honestly) and I know for a fact that some of those gifts are NOT for me. Exhortation? Is there a way to do that without actually talking to people? Teaching? Can I do that without dealing with children, or parents? Or adults? Yeah.
BUT… here’s what I know I can do. I can support ministries and missions by giving of my time and money. And the easiest way to do that? buy a tee shirt… and wear it. In public. It started out as a bit of a joke. I would wear slightly controversial shirts to church to see if anyone would ask me what my shirt said, and more importantly, what it meant.
I moved onto adding patches to my purse and jean jacket. Things that I liked, things that I cared about. Mostly benign, but a few more controversial. And people would ask me about where I had gotten the patches, how I might have known about something particularly esoteric… it was a way for my tribe to find me.
As time went on, I started wearing more controversial shirts. I wanted people to ask me about the shirts–I wanted people to see what I supported. It was my way of exhorting about an issue without actually having to necessarily talking to people. And now? I’m known for it. When I walk in, it’s not, “hey, Jenn,” it’s “what does your shirt say today?” And that makes my heart happy. Because maybe that’s the only way that someone may have heard about a particular charity or cause. And yeah, sometimes I go a little passive-aggressive about it, like when I wore my “close the camps” shirt to visit more conservative friends. Or the time someone was guest preaching and I wore a “I didn’t say that –Jesus” shirt. But most of the time, I’m just hoping people will have a conversation about something that I feel strongly about.
So yeah. I have some obnoxious shirts. And yeah, I’m going to keep wearing them to church, and work, and where ever else I feel like doing it. Because it’s my way of evangelizing. And if that makes me like the Virgin Mary, I’m okay with that. She was pretty cool.
“Middle school is kind of like Middle-earth. It’s a magical journey filled with elves, dwarves, hobbits, queens, kings, and a few corrupt wizards. Word to the wise: pick your traveling companions well. Ones with the courage and moral fiber to persevere. Ones who wield their lip gloss like magic wands when confronted with danger. This way, when you pass through the congested hallways rife with pernicious diversion, you achieve your desired destination—or at least your next class.
I hated middle school. At least when I was in elementary school I had the freedom to go to classes appropriate to my learning level. But when I was in middle school, there was no real differentiation. There were three tracks, period: behind, average, or honors. Now, we were at a Catholic school, so even the kids in the “behind” class would have been considered average in a non-parochial school system, but to be put in a remedial class was considered a death sentence for any social life you were going to attempt. Throw in the towel now, kiddo; you aren’t even a nerd. You’re a LOSER.
Because I had to transfer from a different parochial school, I was an outsider. I wasn’t as foreign and exotic as those kids whose parents were recent immigrants (Humberto or Amadeli), or as new to uniforms as someone who had previously gone to public schools (Christopher or Bernard), so I didn’t have a special aura. I was just another Catholic kid who had gone to another Catholic school. Worse yet, I was younger than everyone else, too. In sixth grade it looked like a third grader had escaped their class and was trying to hide in Sister Kathleen’s room. Which, given Sister Kathleen’s temperament, would have been a desperate act indeed.
Add to this my complete inability to mask successfully with the popular kids, and it was an inevitable race to disaster. While I managed to keep the meltdowns at bay (for the most part), it was obvious that I would not fit in with any of the established cliques. Let’s face it, in a school riddled with Quinns, I was a Daria.
That changed the day that I sat next to a girl named Jennifer Madison. The entire school seemed to be named Jennifer back then, and there were at least four in my class alone. My math teacher preferred to seat us alphabetically, and by the luck of the draw I was placed in the back of the class next to Jennifer Madison, behind Charles P. (who was rumoured to pick his nose and EAT HIS BOOGERS), and with Bernard (Bernie) T. on the other side. So there we sat for the first month–me just trying to keep up with 6th grade math, not really caring about making friends anymore, when we had a fire drill. As per the norm, we dutifully lined up and walked out the door and into a large field next to the school As an aside, this particular field was full of DRY GRASS, by the way, so I’m not sure how this would have been any safer in the event of a real fire. We also inevitably ended up in the spear grass / burr grass area, and I had a rash for like a week afterwards.
As we were walking, I tripped and almost fell. Jennifer pulled me back up and asked me if I was okay as the other kids taunted (nice trip, KLUTZ!). I thanked her quietly, and readied to move on quietly with the rest of the class, head down so that I could see where I was going. She leaned in and whispered to me, “don’t let the assholes get to you. They’re stupid, anyway.” I almost tripped again and I snickered lightly.
When we got to our spot (in the spear grass, again), I subtlety moved to the back of our group, away from the popular kids and any potential rash causing grass, Jennifer moved with me. I stopped to look at her; she was like nothing I had ever seen outside of a movie. Jennifer wore a purple purse covered with pins and buttons advertising 80’s hair bands like Motley Crüe and Def Leppard. She opened it up to rummage around and I could see the make-up inside. She had MAKE UP–at like 11. She pulled out a small tube of cream and handed it to me.
“here, it’s Benadryl. I get rashes, too.” Mumbles, “thanks.”
I looked up at her, since at my age EVERYONE was taller than me. Her black hair glistened blue in the afternoon sun. I would later find out that she dyed it black. Her natural hair was a darkish brown, but she preferred to have blue-black hair, like her idol, Joan Jett. Jennifer wore eyeliner and mascara, which set off her blue eyes. At our age, none of us had even mastered blush correctly, but she had a perfect cat-eye. Her skin was paler than I had ever seen on a girl with dark hair with a few freckles dotted across her nose. Her lips were stained red with lip gloss, since we weren’t allowed to wear lipstick at school; she looked like she had just eaten a cherry popsicle. She wore the typical jelly bracelets of the 80’s, but hers were all BLACK (not a whiff of neon) along with a studded leather bracelet. And while the rest of us were wearing saddle-shoes or Bass shoes… she wore patent leather Mary Janes with a tiny wedge heel. In a word, she was COOL.
She leaned in slightly so I could hear her better. “I’ve been in school with these bitches for the last 5 years.” I gasped. She was cussing! Within earshot of the nuns! “But I’ll tell you something…” I leaned in a little closer. “Shannon once peed her pants in front of everyone in Kindergarten. So don’t sweat her giving you any shit.”
And with that, we were friends. She showed me how to put on make-up, and introduced me to pop and rock/roll music. My parents, bless them, had opted to listen to a radio station that specialized in “the best of the 60’s, 70’s and today!” But it was mostly oldies. Little by little, I began to care a little less what the popular girls were doing, and developed my own interests. I made friends with some of the other excluded girls… I read more horror and young adult books. I quit dance class (which was paired with the cheer-leading/gymnastics class, so I was stuck with the popular girls again) to take art and EXCELLED at it. And through it all Jennifer Madison just hung out with me, along with a few of the other not-quite-popular-enough girls.
When I got my period at school unexpectedly, she was the one who helped me navigate through the Carrie-like horror that is an 11 year-old girl bleeding all over the place–and she didn’t shame me, or make fun of me. She just told me that I needed to keep pads in my purse, and change of underwear and shorts in my backpack or desk so I had options if there was an accident. She explained to me how to clean blood out of clothing, and showed me to sit on sheets of loose leaf paper the rest of the day so as not to leave prints on the desk chairs. She even showed me how to descreetly place and throw the paper away so as not to alert the other girls. She understood just how to explain things to me: no euphemisms, no condescension, best of all: no shaming. She was like a super-cool big sister who would tell me the unvarnished truth, but with compassion behind it.
When I graduated from middle-school (yeah, we had a graduation mass), my parents decided I should go to public school, and I lost track of Jennifer M. Sometimes I wonder if she ever got to see all those heavy metal bands she loved so much. I wonder if she got to go to a regular school where she could finally dress how she wanted to instead of gothing up her uniform. I wonder if she ever had any kids, because I’m pretty sure they would be awesome and have the best taste in music ever.
Maybe someday we’ll connect again on Facebook or something. Until then… I’ll just always carry some pads/tampons in my purse, and have a change of clothes in my desk at work. Because… hey, you never know.
Sometimes being spectrum is like having a super-power. Not like a really fun super-power like flying, or being super-stretchy, or laser-beam eyes… but in that having a brain that’s wired just a little different means you can do things that “normal” people can’t do.
But what is normal?
Now, given my academic background, I know that society decides norms, and those norms, when taken together constitute a state of normal-ness. Think of it as social constructivism, or a societal contract, where we (as a society) decide that there are things we all just DO and things we just DON’T DO… these are norms. Norms exist on various scales, we have societal norms that may apply to the whole human race, and norms that exist within just a small group of friends. The important thing is that everyone agrees. For instance, we may all agree as Americans that it is normal for us to be able to say what we like about government officials without fear of imprisonment. This is NOT the norm in other countries. Or, perhaps it is normal in Texas during the summer to consider flip-flops an all purpose shoe that can be worn anywhere from the river to a wedding (provided it’s “dressy”). This would NOT go over well in Wisconsin. Or finally, maybe in your family it’s considered normal to refer to your relatives by a nickname that (to others) may seem rather mean. Someone coming into your family may not understand why you refer to your cousin as “Africa,” and when you explain it’s because of the scar on the back of their head that is shaped like the Nile river, which was acquired by under-age drinking and falling off the back of a moving vehicle…. yeah, you know, that is really mean. never mind that example.
But those of us that are on the spectrum, we find it a little more difficult to recognize and apply these norms, particularly social norms. I have had people explain to me that my manner is “gruff,” and I’m “too blunt,” when talking with people. I like to wear what is comfortable, and don’t really follow fashion trends (unless that trend is comfortable). When I was in high school, I would cut the labels out of my clothing, which my fashion fiend friends found horrifying. It was the 1980’s after all…. labels were IMPORTANT.
“How,” they would ask, “will people know what you’re wearing?” “why does it matter?” I would answer, honestly confused as to why it mattered. “I’m just wearing this I’m not naked.”
Until someone explained to me that what I was doing/wearing/saying just wasn’t done I would just keep on doing it…. as you can imagine, my middle and high-school years were a nightmare.
But sometimes, sometimes what makes us different or not-normal is what makes us better than normal. Sometimes those quirks of our brain’s wiring give us powers.
If I decide I want to learn something, I can learn it quick. When I decided I wanted to learn how to play a drum-kit, I borrowed a friend’s electronic drum-set and watched YouTube tutorials all weekend…. and then I could play the kit. I did the same with my parlor guitar and a ukulele. It’s the patterns, you see. I did similar things when I was learning Kung Fu, Jeet Kun Do, and FMA. Once I got the pattern, it was mine to do with as I would.
I also have near-perfect audio recollection, and pretty decent pitch when singing. When people ask me how I do that, I have to answer, “I don’t know. I just can.” And this is what gives me hope for the future. Perhaps now, with girls being diagnosed at much younger ages, girls like Greta Thunberg can truly change the world in ways my generation could not. Because even though they know they don’t fully understand “norms,” they also don’t care.