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:

Continue reading “Unable to Speak: Being Cautious When the World Spins Out of Control”

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.

 

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

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.

Continue reading “Being Myself: Autistic leadership in a Catholic environment”

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”

Posted in Autistic Identity, Books

Neurodivergent Meg

Here’s an archives piece that will be even more relevant soon with a new version of A Wrinkle in Time hitting the big screen in the spring of 2018.  The new movie will feature a Black Meg and given how infrequently Neurodiverse types are female, let alone girls of color, I am already thrilled by this casting.

[This is an early cover of A Wrinkle in time. It has a large planet or somesuch in the right-hand corner, partially obscured by the darkness, and three “witches” in different kinds of dress as well as Meg, Charles Wallace, and Calvin watching the Happy Medium, who appears to be a person of color, and is dressed in red and holding a sphere aloft]

Anyone who knows Madeleine L’Engle’s classic story, A Wrinkle in Time, the Newberry Award winner that was considered “too hard” for children and subsequently rejected over two dozen times, knows the story is special.  It’s the story of a family whose professor father is missing and the journey his “misfit” children, Charles Wallace, the baby, and Meg Wallace, his eldest daughter, undertake to rescue him.  Both mother and father have multiple doctorates and mom even works in a lab at home.  This is normal to the Murry family (if not the town). To the Neurodivergent crowd, A Wrinkle in Time can be seen as one of those special stories that means a whole bunch.

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Posted in Blogging about the Blog

I’m back!

The domain was due to retire and I got to thinking about whether I should let the blog go or not.

I think you can see what I decided.  I’m going to give it a try to be as carefully anonymous as possible.  I will inevitably mess this up and reveal my identity here and there and then try to fix it. Anyway, for those of you who may know me offline (or think you do), do be mindful of the fact that I’m doing my best to balance my need for privacy with the desire to make a difference in the intersectional space of being a Catholic Autistic and what it means for me as an educator, wife, mother, employer, and so on.

I’ll be bringing back old articles with random dates to suggest their relative “oldness” (and yes, people who advised me, I could have just backed up the blog instead of porting out the articles and this would have been much simpler) and blogging anew as I think of things to say.

If you had a particularly favorite piece from the old site, let me know, and I’ll see if I can dig it up and bring it back sooner, rather than later.

Welcome back, readers!

Posted in Autistic Identity, Neurodiversity

Neurotypical Privilege: Unpacking the Invisible Knapsack

I modified this absolutely wonderful piece by Peggy MacIntosh (which I remind you all to read every so often) to focus on Neurodiversity.  I haven’t seen a Disability adaptation, and, while I’d like to make this broader to include more types of Disability, I only know my own area of Disability, so I thought I’d give it a whirl.

Neurotypical Privilege: Unpacking the Invisible Knapsack

(a modified list based on Peggy MacIntosh’s seminal piece on White Privilege)

[Image: A White woman with black, wavy hair and pale skin wearing a white top is seated near a white vanity (that looks almost dresser-sized). She refuses to look in the oval mirror. She holds a hand to the mirror; her image is looking back at her. The room is a seafoam green.]

 

1.  I can, if I wish, arrange to be in the company of people of my neurotype most of the time.

2. I spend money on electronics and “gadgetry” as a discretionary part of my income; if I can’t buy it now, it will not impede the quality of my work and/or social life.

3. If I find a tag in a clothing, I can wait until I get home to remove it and go on with my day as usual.

4. If there is a strong smell in the building, once I have recognized it, I will ignore it and go on with my day as usual.

5. If I struggle to speak, people will allow me to take my time to recover and will not speak for me unless I give them permission.

6. I can turn on the television, browse the Internet, or open to the front page of the paper and see people of my neurotype widely represented, not just in “inspirational” stories, fear stories, and/or crime stories.

7. I can browse the Internet without stumbling upon a group that would destroy people like me because my neurotype deviates from the norm.

8.When I am told about our natural heritage or about “civilization,” I am shown that people of my neurotype made it what it is.

9. I can arrange to protect my children most of the time from people who might not like them.

10.  I can swear, or dress quirky, or not answer telephone calls without having people attribute these choices to the lack of social skills of my neurotype.

11.   I can speak in public to a powerful group without putting my neurotype on trial.

12.  I can do well in a challenging situation without being called “more than my neurotype.”

13.  I am never asked to speak for all the people of my neurotype.

14.  I can be pretty sure that if I ask to talk to “the person in charge,” I will be facing a person of my neurotype.

15.  I can go home from most meetings of organizations I belong to feeling somewhat tied in, rather than isolated, out-of-place, outnumbered, unheard, or held at a distance.

16.  I can disclose my neurotype at work without having co-workers on the job suspect that I get preferential treatment because of my neurotype.

17.   I can disclose my neurotype at work without having to worry that my co-workers will be afraid of me.

18.  I never have to worry about whether to disclose my neurotype at work since my neurotype is considered to be “normal.”

19.  If I disclose my neurotype at work, I do not have to fear being fired as a result of that disclosure.

20. I can be sure that if I need legal or medical help, my neurotype will not work against me.

21.  I can tell friends, family, colleagues, and strangers about a condition I experience without being questioned about whether or not I really have that condition.

22. If my day, week, or year is going badly, I need not ask of each negative episode or situation whether it has ableist overtones.

23. When I talk about my special interests, people don’t call them obsessions or ask me to change the subject.

24. When I disclose my neurotype, people won’t tell me that I should hide it because people don’t need to know.

25. When I disclose my neurotype, people won’t tell me stories about other people with my neurotype and how they “know all about” my neurotype from those one or two experiences.

26. When I disclose my neurotype, people don’t compare me to a celebrity of my neurotype and ask how I’m like him or her.

27.  I have a reasonably good handle on how much, or little, work I need to do at my job to avoid negative consequences.

28. When I try to talk about my neurotype and how it affects me, no one tries to tell me “everyone feels like that.”

29. When I make parenting choices, or any choices, my neurotype will not be used against me in judgment of those choices.

30. The number one group supporting people of my neurotype does not actively seek to eradicate my neurotype.

Posted in Autistic Identity, Books

Telekinesis & Neurodiversity: How The Girl With the Silver Eyes Spoke to Me

The Girl with the Silver Eyes by Willo Davis Roberts was first published in 1980, it is still available (check out Scholastic’s book club!) and continues to be relevant even today.  Read more about how this book resonated with me as an Autistic tween.

 

My book is more beat-up than this (the cover fell off!), but this was the version I had. Thanks to the Topeka & Shawnee County Library for sharing this image [Image: a silver-colored book cover; a girl stands in front of an apartment building; she has long brown hair with a pink barrette in it and wears horn-rimmed glasses; she looks out at you while a man in a white suit tries to carry his now floating groceries]
Continue reading “Telekinesis & Neurodiversity: How The Girl With the Silver Eyes Spoke to Me”