An Ember in the Night

    How can I possibly express a grief that it so many different things?  That shifts form from day to day, sometimes from moment to moment?   In the beginning there are so many tears.   I sob and sob and sob.   When my sinuses began to burn in pain I will myself to stop, only to start again.     I wish my heart would fail.   I read that this can happen sometimes in grief, but it’s rare, and rarer still that it would kill someone.   So I imagine taking things into my own hands.   I picture the blood flowing out from my wrist and the pain departing my body with it.   I fantasize that a progressive sense of calm might envelop me, casting all awareness away until there is nothing.   Is that how it feels?   I look it up.   Google says it is an excruciatingly painful way too die.   I shut my laptop and curl up into a tight ball, as if to protect my body from myself.   I can’t take the thought of mo...

  I often find myself stumbling back into this place of confusion.   There is a despair that comes with seeing your traits labeled as “deficits”.   Your very way of thinking “disordered”.   With knowing that society is eager to know what causes people to think and feel and process the world as you do, and to prevent this from happening.   To cure you.   To make you like them.   There is an othering in all of this.   In being called “special” when you know what they mean is that it’s too shameful to even name you as you are.   To be told that you are not Autistic, you simply have Autism.   You are still first and foremost a person.   As if anyone else needs to be reminded that they are a person.   There is sadness and anger that comes as a parent when these same attitudes are projected towards your children, as if the so called “normal” children are preferable to your own.   As if yours is deficient.   As if yo...

These are the impacts my nuclear family and first degree relatives might face if Trump's proposals go forward. I have a child on an IEP, meaning, they receive additional services at school to support needs related to their disabilities. If the Department of Education is eliminated, the funding for those services goes away.  We can hope that someone else decides to fund it, but even a temporary disruption in services could be damaging.  The more a child falls behind their peers, the harder it is for them to catch up, and this is especially true when they are disabled and already have a steeper ladder to climb. I also have a child who will soon be graduating high school.  Changes in funding may increase the already staggering cost of college and that has added significantly to the stress of this transition.  We want to be able to plan wisely for their future, but it's hard to plan when the future appears so unpredictable. One of our kids is gay and nonbinary.  Tho...

Sometimes I feel like I have no idea what Autism actually is. More than four decades spent living and growing as an Autistic person, nearly five years of being diagnosed, and hundreds of hours spent learning all I could about the topic.  Still, I barely have a clue. Sometimes I read about genetically linked conditions, such as ADHD or Schizophrenia, and I wonder if the lines we draw between them really ought to exist. But more often, I wonder whether this thing we call Autism is really a single condition at all, or whether it's many. A couple of months ago I unexpectedly came across some old writing of mine, which outlined the results of some fairly extensive psychological testing I had undergone.  My summary of their findings included the determination that I had poor parallel processing.  I hadn't recalled this, and I was excited to stumble upon it in a way that few people would understand.  Immediately I thought, surely this meant there was concrete, objective evi...

It has always felt to me as if most of the world is too loud. There is this buzz of anxiety that vibrates within my head. It grows ever the more intense, decibel by decibel, each time my thoughts are interrupted, or I have to switch gears, or the music on the grocery store intercom clutters my brain, or eyes bore into me, or I say the wrong thing, or... Usually this unbearable sensation comes not from any truly profound loss or injustice, but from a multitude of small, ordinary things that accumulate with a collective weight. These days, though, it's also the news that feeds this deafening buzz. The news generates never ending worries, about my future safety and wellbeing and that of my loved ones. About the lives of people I don't even know, but whose souls nevertheless reach across the miles that separate us and touch me. There are so many things about people that I don't understand, but I know what it is to struggle. To hurt. To feel vulnerable. It's strange, in a wa...