Worries/Fears, Quarantine Edition

When I was in elementary school, I was in multiple different therapies. I had physical therapy, I had occupational therapy, I had speech therapy. I remember my dad doing things like marching with me (helping me learn to walk heel, toe). I also remember my parents using hot sauce, chili powder. and rubbing alcohol on the tips of my fingers to try and make me stop one of my stims. (I suck the first two fingers on my left hand. It helps me sleep, and has been one of my longest-lasting and most-calming stims.) I recall not being allowed to have what all my siblings had until I had pronounced it correctly.

Today, I’ll give my parents the benefit of the doubt. Maybe they really were doing the best they could, maybe they truly didn’t know that what they were actually doing was traumatizing me. I haven’t been able to believe that in the past, but maybe they honestly didn’t know that they could never succeed in changing me. I’m not a broken or defective NT – I am, and always will be, autistic. Occasionally, I can mask well, but my preference is to not do that anymore. I prefer to be openly myself, and since being so open and honest have found that some people really look up to me and consider me a role model. There are kids who know that I’m autistic like they are, and that I am also a teacher’s aide. They know that I’m a mom of an allistic child, giving them reason to believe that they, too, could raise a family if they want to.

My fragmented memories have me concerned for some people, though, especially kids who are in different therapies at school. In my state, schools have officially been closed for the remainder of the school year. This means many students will lose the benefits which come along with some of these therapies. My father teaching me to march has helped me to consciously think about how I walk – my right knee has been losing cartilage for years, and my hip is starting to have similar pains. I worry about how much worse off I would have been without physical therapy. And my fine motor skills are still nowhere near where they should be for an adult, but I’m able to produce legible handwriting. Being able to write and type is incredibly important to me, that often tends to be my primary mode of communication with those outside of my household, even before the quarantine.

I worry because, what will happen to these students? While some of them have parents who are privileged enough to be able to still provide them with supports, there are students who will no longer get the supports they need to help them learn. There are students whose parents have learning disabilities, yet are trying their hardest to help their child at least retain what they have. There are those whose parents dealt with the same struggles in childhood, and have very deep empathy and compassion. But there are also students stuck at home with abusers. Stuck, not safe, in a “home” where they have never been and will never be safe, regardless of the pandemic. I worry because our global crisis is already traumatizing enough, what will happen to these little ones who are coping with so, so much more?

I can’t even imagine what would have happened if, during my childhood, something of this magnitude had occurred. If I had been trapped at home with my parents (who would not have qualified as essential workers given their respective jobs at that time were secretary and neighborhood watch) and my brothers, nothing would have gone well for any of us. One of my older brothers was incredibly abusive, would use us smaller kids as his own personal punching bags. My parents had no idea how to raise 5 children, and they seemed to have basically given up by the time I started school. Which leads me to believe that, in a crisis like this, they likely would have done what they did during our breaks from school – pretend we didn’t exist, except at mealtimes. I am incredibly grateful that nothing like this did happen during my time in school, but I cannot help worrying about the more vulnerable among us who are stuck in horrible situations right now.

Autism “Awareness” Month

I wish I had something clever or witty to start off with, but I don’t. I have been struggling with my mental health recently – we are a month into this quarantine, which means a month of everybody always home, not being able to get the solitude that I so desperately need for my mental health. I’ve also been dealing with a lot of my childhood trauma lately, and seeing the true extent to which I have learned to mask. So I took a few days off to re-center myself, do some self-care, and try to come up with a plan going forward for handling this current situation.

In the midst of all of that, I almost forgot that this month is Autism Acceptance Month. (I put “awareness” month in the title because I am hoping to get views here, so I tried to play into algorithms.) Disclaimer: This piece is about how I, personally, experience life as an autistic person. I am not trying to speak to anyone else’s experience, as all autistic folx are not the same, it is a vast spectrum and my experiences are not the same as everyone else’s. This piece SHOULD NOT be used to invalidate any other autistic person’s lived experiences!!

I was diagnosed as autistic when I started kindergarten. Due to PTSD, I do not have many memories from that time, but I remember taking a bunch of evaluations, and being transferred from one kindergarten class to another. I only learned about the diagnosis a few years ago (I was diagnosed in 1991), because my parents went to great lengths to hide it from me. If I asked why I was tested, I was told that my parents had insisted the school give me an IQ test. The switch in classes was brushed aside as “a more convenient time,” for my mother to drop me off/pick me up. I don’t remember ever asking, or even wondering, why I was getting physical, occupational, and speech therapy at school. I accepted their reasoning, never thought to question whether they were telling the truth.

As I grew up, I slowly came to realize that my family was incredibly mentally and emotionally abusive to me. Eventually, I was able to cut all ties with them, I now have a wonderful adopted family, and began down the path that would lead to me finally learning about my diagnosis. I became a teacher’s aide in a self-contained, autism-specific, special education class. Working with these students brought back memories that I had repressed for years, and I grew so curious that I ended up contacting my former elementary school. I was able to explain my situation, prove that I was requesting personal information only about myself, and finally got to see first-hand my official diagnosis – autism, with significant language delays, significant gross motor skill impairment, significant fine motor skill impairment. Suddenly, my life seemed to click into focus for the first time ever.

For as long as I can recall, I have wondered why I seem to not be able to function the way everyone around me is able to. Why do I get so distressed when I’m thrown off of my routine? Why do my hands flap so much when I’m excited? Why can’t I look people in the eye for more than a fraction of a second? Why do I sometimes throw “tantrums” that I cannot control? Why can’t I control them? All these questions and more would play on an almost constant loop in my head. There were times when I felt jealous of autistic people, because they could do these things that I needed to do. It never occurred to me that I had these needs because I, too, am autistic. I thought I was (for lack of a better term) trying to appropriate autistic culture. So when I learned about my diagnosis, I had to learn as much as I could about other autistic folx, and immerse myself in this culture I had spent so long not knowing I belonged to.

While I’m still trying to figure out how to handle certain aspects of my sensory processing issues, I have found out quite a bit about just how deeply autism makes up who I am. Written languages come fairly easily to me, but speaking and understanding people who are speaking to me is far less so. There was a period in time where I communicated solely through American Sign Language – other people could speak verbally to me and I would (more or less) understand, but verbalizing has never come naturally to me. I am able to verbalize quite a bit now, but it still is difficult unless I am truly comfortable with the people around me. I prefer to communicate through non-verbal means, and I am eternally grateful for instant messaging and texting technologies. I also enjoy communicating through music – I primarily sing, but I love watching dance. I am finally comfortable with allowing myself certain sensory stims which give me great joy – primarily a blanket with a lovely satiny border, and a good pair of noise-blocking earbuds for when the noise around me is too much to bear. I have a hammock in my yard for when I feel the need to swing. And, I have a family who allow me to take the time I need to myself to keep my mental health in balance. I consider myself lucky to be autistic, I see it as my super power.

In becoming more open about my diagnosis, I have become somewhat of a role model to my neurodiverse nieces and nephew, as well as some of their ND friends. Since our society typically sees autism as something which only affects children, many autistic and otherwise ND children grow up to think there must be something wrong with them. The image portrayed is that people either grow out of their neurology, or they are too incapacitated to live independently. Rarely has there been any in-between shown, until extremely recently. Since I tend to be very honest in answering questions, even personal ones, they have gotten to see that there are adults who understand what they are going through. They get to see me struggle, because I don’t try to hide it. They know that I have meltdowns in private, because I explain to them afterwards why I had to excuse myself from a situation. They watch me find accommodations for my difficulties, they see me ask for help when I need it, and they see me advocate for their needs. (Heck, the inspiration for my pen name was these kids – half the neighborhood calls me Auntie, and we are in the process of turning our large attic into a small apartment for myself and my son.) I love that I get to be the role model for these amazing kids. They need to see more representation, not just in Hollywood and our media, but in reality. Our kids need to see more folx like Greta Thunberg, Carly Fleischmann, Sir Anthony Hopkins, Dan Aykroyd, etc. We need to see people who are adults, #actuallyautistic, and thriving!

Before the Quarantine

As we begin our third week of social distancing here, I’ve decided to fondly reminisce about the days of yore, when people could leave their houses for non-essential reasons. Back when some of us were mocked and looked down upon for preferring our socializing to occur over social media, via the internet. A time when children would be out of the house for 8 hours a day, 5 days a week……

Last summer, I tried my hand at gardening for the very first time. I’ve always had more of a black thumb than a green one – every potted plant I have ever been gifted has died a slow, sad death. Every. Single. Plant. I’m friends with a couple who would regularly invite me to watch their cats and their condo when they went out of town, but I was under strict orders not to touch the plants. These poor things don’t stand a chance, if I’m in charge of their survival. Naturally, I figured I was just inherently deficient at plant care, and turned my attention to other interests, to the delight of vegetation everywhere.

When I moved from the city out to the middle of nowhere, I decided there could be no better time to try and improve my botanical skills. My sister-in-law is an incredible gardener, and she agreed to help me learn how to (hopefully) keep a plant alive. Believing that I might have a better outcome if I began with something she had already started to grow, she gave me a tobacco plant that needed to be transferred from a pot into our garden outside. We prepared a spot, dug my new tobacco sprout it’s very own hole, placed it, and filled the hole back in. I was hesitant to hope that this plant would survive very long – refer back to my earlier statement regarding every other plant I’d ever cared for. A picture was taken to prove that this plant did, in fact, live at one point in time.

I was slightly unhappy when, two days after I put this little guy in the ground, I noticed deer had been snacking on him* in the night! *I do not know how to determine the sex of a tobacco plant – this one just seemed like a guy to me for some reason, and I always would use male pronouns when I talked to or about him.* To try and keep them from continuing to destroy what I was beginning to hope might be the first of an eventual tobacco crop, we built little lean-to’s around all the tobacco we had in the ground – these worked to varying extents until our plants grew large enough that the juice was too bitter to be tempting to the local fauna any longer.

Surprisingly, my little guy lasted for over a month and a half, before an early freeze took out most of our plants. He grew pretty big, too, which gave me the encouragement I needed, before the ground froze, to buy and plant a bunch of tulip bulbs (tulips are my absolute favorite flower). I’m still waiting for the ground to thaw this year, but I’m actually hopeful that my tulips will bloom, and that we will get all our crops in the ground early enough to be able to harvest before the freeze this year. Fingers crossed, this quarantine gives us the time and people needed to get everything done, without killing ourselves in the process!

Homeschooling on the Homestead

Tomorrow starts week 3 of homeschooling here in eastern Washington state, in the oh-so-wonderful USA. Our household is unique in quite a few ways – none of us adults work outside the home, three of us are teachers, some home-school experience prior to this, access to loads of resources, some experience even with building curricula. We live outside of town, on a few acres of land, so isolation isn’t new to us. Really, our biggest change has been having all the kids home all the time, so we’ve been pretty lucky.

My kiddo doing his homework, day 2 of quarantine (Tuesday, March 17, 2020)

Even with all of these advantages, though, home-school isn’t easy for any of us, especially right now. Our house is great academically speaking, our kids will continue to learn for the rest of the school year, at the very least. The uncertainty of life outside of our little homestead, however, adds challenges for all of us. Some family members are chafing at feeling confined, not being able to socialize as normal or go do things they would normally do. Others are having a difficult time with the abnormality, nothing like this has happened in our lifetimes. And yet others still believe that this is all being blown out of proportion. Interesting times we live in, for sure.

One thing I can guarantee – my son, my nieces, and my nephew, would not be doing anywhere near as well as they are if not for their incredible teachers. Our school district missed exactly one day of schooling when our governor shut down schools state-wide. This district has been amazing when it comes to making sure kids have meals, contacting parents to coordinate work, contacting students to check in, providing resources for parents and students, and also with allowing some flexibility for us to handle life as it comes at us. Not all school districts have been so organized, from what I have seen, although the staff members are definitely trying their best!

My final thought, a bit of advice to my fellow parents, my fellow educators, and everyone who is impacted by our current crisis – give each other grace. We all are dealing with a lot of stress, this pandemic and everything surrounding it can be terrifying for all of us. I truly believe that the only way we can make it through, is by being kind to everyone. Help where you can, don’t go out unless you have to, and for gods sake, wash your damn hands!