Their fight is our fight

Before I closed and reopened the blog, I spoke sometimes about our “cousins” in the Down’s Syndrome community.

Did you know that Iceland is proud to have aborted statistically 100% of its babies with Down’s Syndrome (people with Down’s Syndrome prefer person-first language)?

They are proud.

They are PROUD.

Even if you don’t find this morally repugnant on its face, consider that they are doing increasing genetic testing on Autistics.  Someday, aborting us in the womb will also be a so-called choice.

Iceland, this isn’t okay.

Here’s a Catholic blogger’s take on it with a brilliant unicorn analogy, and even a nod to Harry Potter: http://www.ncregister.com/blog/antonetti/its-a-monstrous-thing-to-slay-a-unicorn

 

Posted in Autistic Identity, Catholic leadership, leadership

Truth and the Renegade Leader

One of the things about being Catholic is that we are called to believe in one Truth (capital T) which is Jesus/God/Holy Spirit…you know, TRUTH.  And this actually fits in line with what I think the Autistic view of Truth is…the idea that there is one factual truth in all things.

But we also, as Autistics, believe in multiple perspectives.  As in, one person’s experiences will affect the way he or she tells the story.  Sometimes Autistics who have not been “woke” to this truth still fight it and believe only one view of events can possibly exist, but increasingly, as one becomes an activist, one learns about perspective, white privilege and so on.

In leadership, there is another kind of truth, I think.

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Posted in Mutism, Self-Care

Unable to Speak: Being Cautious When the World Spins Out of Control

Self-care is important, especially for Autistics.

I’ve been semi-following the events going on on Autistic twitter lately: the Nazi rally and deaths, the watching and decrying of that Netflix series, Atypical, which hasn’t had any Autistic consults so it generally is cringe-worthy, sucky television.  This is on the heels of the health care debate and also in the midst of whether we’re bombing North Korea and/or Venezuela and I had college friends from Guam so I actually know where that is and….

So, yeah, the world right now is getting a bit spinny out of control.

I’ve noticed that we Autistics, likely because we can’t go out as much as neurotypicals, will obsess online with what’s happening in the world and how it’s showing us how the world is going to end.  I’ve been trying to just say some prayers and let God fix it.  Why?  Not because I don’t want to help, but because I know what is likely to happen to me if I’m not careful.  We start school in a little over a week, I can’t lose my voice now.  I can’t have a melt-down now.  There’s never a good time to struggle Autistically, but some times are worse than others.

So I’m careful about how I interact online.  I have to be.  And honestly, with today being the feast day of St. Maximilian Kolbe, the priest who gave his life for another prisoner in Auschwitz, who refused German citizenship just because he couldn’t handle the white privilege and got locked up just because of that, well, I’ve gotta believe he’s got this.

What follows is my account of the first time I was unable to speak.

A few times when I was younger, I remember not speaking because I was mad about something and didn’t want to speak, lest I say something stupid.  I think it was a conscious choice, but now I wonder if it was or wasn’t.

Last night, when I got to my evening class, I realized that I left something at home and as I was searching for a virtual copy, I was struggling to come up with the right search terms.  I was going to have to come up with another version of what I would have brought to discuss, or admit I couldn’t present.  Not a huge deal, since my teacher is understanding and I could have submitted it upon returning home where I would surely have found what I was looking to find.

But during this, I think I stumbled onto the Facebook feed of one of my former students.  A Latina, she has three daughters.  They are all citizens (not that it matters).  Her eldest daughter was legitimately scared, and asking over and over again whether they should be packing since they’re going to be sent back to Mexico.  This, clearly, freaked out the younger girls.

Around this time, I realized that I wasn’t able to speak.  I talk to myself a LOT.  I like to hear the sound of my voice and rehearse things I’m going to say.  I was sitting alone in a room, and suddenly, I couldn’t speak.  I couldn’t decide if I was faking or not.  I started panicking.  Then, I remembered the Autistic Twitter Universe talking about how people were internalizing the pain of others today (moreso than usual) and it was going to be a hard day.  I remembered my husband losing his voice at work when he was stressed.  In his case, it got better when he came home.  I texted him and then decided to tell my teacher, in writing.  Fortunately, he’s easy.  We had a conversation while I wrote and he spoke and he said I could leave or stay and we’d make things work.  We did, as it happened.

Here’s how the experience went:

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Posted in Advocacy, Parenting

Megaphones, Not Warriors: The “Autism Parents” We REALLY Need

 

[Image: The monument of Motherland Calls in Mamayev Kurgan memorial complex in Volgograd (former Stalingrad), Russia.; the statue is on a hill of green grass; it’s a woman with a flowing toga-style dress reaching one arm back. The other arm is raised to the sky, with a sword. The question is, is she asking her followers what they want to do or telling them?]
This piece is from one I published last fall or winter.  The words I wrote then are even more relevant to me as I work to create a school for people like me (and Disabled people not like me).

 

When you talk about creating a school that’s inclusive, you get nay-sayers talking about people pulling knives on kids.  Yes, I guess that’s a risk, but I see us more as a sanctuary for people who have been victimized by other educational alternatives.  You know the type (many of you ARE the type!)…someone made you sit in a chair at a desk and you hurt so much you couldn’t focus on your work.  You’d rather stand or sit or lie down or whatever, but that wasn’t allowed.  Or maybe you have to move, just a little bit, and you just need someone to help you find a movement that doesn’t distract others while it helps you to focus.  Or maybe you learn at a different pace, faster and/or slower than the norm.

But the worst group are the ones who insist kids need to live in the real world sooner, than later.  They need more kids around or they’ll get worse.

Without revealing too much, I lost a young teen this way quite recently.  The so-called experts said he needed more kids.  The so-called experts aren’t Autistic, nor do they have ADHD.  I do.  I know him better than they ever can.  He needs more kids around the way a fish needs to take a walk on land.  Maybe he will in the future, sure.  But he needs for now to love himself so much that he can self-advocate and thereby choose his society and advocate for what he needs for himself when he is ready.  Anyway, I don’t blame his parents.  They’re scared.  Experts scare people.

I will note that he, himself, seemed to want to stay with us, which was support for my opinion.  He was worried about leaving my school and what would I say, which was sweet.  Had he himself said he wanted to try this, I’d tell him hey, let us know if you need anything!  We’ll be here praying for you so you can have a great school year!  But he didn’t, and the mom didn’t, either.  She was afraid, not excited.  She was afraid.

That’s part of why I wrote this piece, too.  Warrior Moms have a source and so often they’re bad experts, and the real underlying motive of an Autism Mom isn’t narcissism (though it often looks like that for many layers…), it’s fear.  These experts who make money off of our suffering are the real problem.   Here’s a repeat of that post where I explored more effective parent advocacy.

 

It’s popular for parents of Disabled children to proudly call themselves “Warriors.”  Common usage in the Autism community is “Autism Mom” or “Autism Dad” or “Autism Warrior Mom” (etc.).  And I get it; I’m the parent of a Neurodivergent child, too, but in the Disability community, we tend to frown on this usage.  Let me unpack a little bit of the problem with this perspective and provide some tips for how you can adjust your thinking to be the best advocate you can be.

 

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Posted in Autistic Identity, Catholic leadership, leadership

Being Myself: Autistic leadership in a Catholic environment

Sorry for the lack of update.  It’s a busy time of year for work.  Without revealing too much, I am a Catholic school principal and we are reinventing ourselves to be more inclusive and also more authentically Catholic.  We pray more, we love more, you know…the kind of school that, if you went religious, you’d want for your Neurodiverse kid because our goal is to help kids to find their true selves and be able to advocate for themselves wherever they go to school next.  The need is great where we are.  But yes, very busy this time of year.

I just had some news that frustrates me to no end.  The teacher I thought I could depend upon to stick with me this year has been wooed away by the public schools.  They can offer him the little things like pay commensurate with experience and, well, health insurance.  I’ve done the math on what I could make, going public, and it’s more than double than what I make now.  Unfortunately, I am Autistic, and I cannot play the “fitting in” games required in public schools.  I just don’t have the spoons for it.

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Posted in Autistic Identity

Thinking in words

This is a reblog from an article I posted around November or December of 2016.  Last night, I was watching an episode of Raising Hope when the Chances are working on their GED.  When Burt, the dad, is being tutored from his son’s co-worker at the store, they are reading Shakespeare.  Burt says he keeps seeing words so the play is boring to him and his tutor tells him that’s dumb and he should instead think of pictures when he reads, since that’s how everyone else does it.  I shouted “ableist” at the screen since, well, that’s not how I do things.

And I’m very highly literate and have read much Shakespeare.

This talk about thinking in text led me to discover more about myself through some helpful blog readers (I think Nicole C. was one of them) who helped me to discover that aphantasia is the name for what this is.  So, if you do this, too, you are not alone.  And it isn’t “dumb” (ableist slur that that is) to think in words; it’s just different.

So, here’s all about thinking in words, from my perspective.

Temple Grandin wrote a book called Thinking in Pictures.  In it, she described how many Autistics (including her) think in pictures.  Recently, in Autchat when we were covering invalidation and doubt (about whether we were really Autistic), it came up that at one point someone didn’t realize that people didn’t all think in pictures.  Then some of us offered that we were word-thinkers.

My world stopped, briefly.

Continue reading “Thinking in words”