White Coat Syndrome

I was told that I had White Coat Syndrome when I always had strange blood pressure issues. One of many diagnoses I assure you.

After I had my son, where my blood pressure nearly killed us both, it became about my weight. I know that weight does have an awful lot to do with blood pressure. Of course, it does. But my overworked primary care physician, who actually told me he’s too busy for me… It was his only answer. For every problem. Every time. I made a joke with my husband that I was going to develop a drinking game when I went to his appointments, and take a shot for every time he blamed something on my “morbid obesity.”

I am actually not that heavy. I’m not the skinny girl I was in high school, or even the chubby girl in middle school. But I have had food problems since I can remember eating. Mostly bingeing on high carb items brought on by mental stress and impuslivity issues. Not to mention low dopamine, and eating during sleep issues. This isn’t about my weight, though. Enough people are interested in that that I don’t need to talk about it.

It’s just that… I’ve never gotten help for a problem I’ve had for a very long time… because I knew what they would say…

Like a lot of neurodiverse people I deal with a lot of chronic physical pain, mostly in my muscles and joints, especially my hips, wrists, neck, hands…. Ok, pretty much every joint, every where. Muscles too.

After I had my son, it got even worse. I was told that I had carpal tunnel related to my pregnancy. Neuropathy from gestational diabetes. I was told that it was my weight and my posture. I was told to go to a chiropractor. I’ve been tested for diabetes so many times, celiac, hepatitis, heart disease, and even cysts on my ovaries. Which had one of the most painful tests I’ve ever experienced, because I also can’t actually fill my bladder. Never been able to. The pain was excruciating. And all for nothing. No cysts, no answer.

I was looking up my own information on autism comorbidites, when I came across Ehlers- Danlos Syndrome. I knew that it was something that effected the autistic community, but I mainly understood it as a mobility issue. I simplisticly thought, “I can walk, that can’t be me.” And that ever constant voice, “Don’t borrow trouble. Don’t take what’s not yours.”

But then I came across the diagnostic critera for EDS and POTS (Postural Orthostatic Tachycardia Syndrome) and I saw all my troubles laid out before me. It was an “aha” moment for sure, but it was also an “oh… fuck.”

You see, the symbol for the Ehlers Danlos Society is a zebra. Becuase of the phrase, “When you hear hoofbeats, think horses, not zebras.” Well people with EDS are the zebras. They are the people that don’t get believed, who get called hypochondriacs, alcoholics, liars, Munchausens, basically an irritating nuisance. The people who get told by their doctors they are too busy for them…

Just to be clear, when he told me that, I hadn’t seen him in like over a year. I was just worried about my blood pressure issues. So, when I finally got the courage up to make an appointment, and he told me that I should get a different doctor about two sentences in… Yeah… I’m sure he was overworked, legitimately. It just was pretty… fucked up.

When I called him during the beginning of the pandemic with my sickness, he pretty much dismissed me then too. But because I have agoraphobia, I was ok with his “call back when you need a ventilator” attitude that was so common then. Everytime someone lectured me on not going to the hopsital I could say, my doctor says to stay home and call back when it gets too hard to breath.

He’s not a bad man. He’s just pretty clear in his biases as he has always treated my husband very differently. He just believes him. Immediately. Doesn’t second guess him. Doesn’t tell him to go away.

But… that’s a tidal wave of bullshit that I am not ready to battle. That’s just being a woman. I can only imagine what it’s like for women of color. Or an immigrant woman. That gets you a hysterectomy in a detention center, apparently. Or if you go back far enough, sometimes, a labatomy. But that’s a whole other thing.

Anyway.

So I have this very probable diagnosis staring me in the face and I just don’t want to deal with it. Even if it is an answer for all the pain. It’s not a curable thing. It will still always be a problem. I will still be disbelieved. It was both a relief and a heartache. I can’t have another diagnosis. I can’t go through the gauntlet of opinions and second guessing and disbelief. Not again.

So I wrote an email to my doctor asking for a refferal to get genetic testing. No diagnosis. I don’t care about a diagnosis anymore. I just want to know if I carry the mutation or not. I want to know for my son. That’s it.

Still…

Zebras sound like guinea pigs… the noises they make. Did you know that?

So when you hear a guinea pig…Make sure it’s not a girl guinea pig. They’re probably pretending to be a zebra for attention.

The Feeling of Falling

When my chronic pain hits its zenith, its absolute worst, and my mental and emotional facilties start to slip because of it, I remember him.

My student, who will remain nameless only because I will never get his consent to say his name- but my former student, who I directed in his middle school plays, that’s not him in the photo but that is me around the same time I met him.

He was the first person to say to me, “I’m autistic.”

It was because I had touched his shoulder to move him to another position, and as a very touch aversive boy he nearly jumped out of his skin. And he said, “Please don’t touch me, I’m autistic.” And having never known anything about autism, because I wasn’t even close to my scope of self awareness yet, at first, I was annoyed. I felt rebuked. But the sincerity of his distress, his voice, stayed with me for so long that I knew it was real. I can see it still, movement for movement, his curly blonde hair bouncing in shock, his blue eyes going wide, the rigid posture, and the stressed blinking. And I think the truth was, in that moment, I had a blue streak of recognition. I am not touch aversive, but I knew that fear and pain in his eyes. I had seen it in my own.

My diagnosis was more than a dozen years away but I saw the truth. And that truth probably made me too hard on him sometimes, just as I was to myself. Just as I was to the other nuerodivergent children that I adored but also wanted to “help” by repeating the same advice to me. Bad advice.

It also made my mother one of his most fierce supporters, even if she didn’t always understand why. I think she saw it too. My mother and I worked together to create these productions if you did not know this already. We were colloquially known as THE Burkhalters, and we occasionally dragged my sister and father into the family business from time to time.

A few years ago, very close to my diagnosis, but not yet. When my son, with his own bouncing curly blonde hair and wide blue eyes, was given his diagnosis. And I kept telling his doctors, “I am not afraid of autism. I have had autistic students. I know how great they can be.”

My student killed himself by stepping off the roof of his New York city apartment. I got this news the way anyone gets news these days, through facebook and rumor. It nearly destroyed me. I’m still hoping the way he did it was just some misinformation, but I don’t believe it was.

No one will convince me that he was beyond saving. And because I know that feeling. The desperateness to make the pain stop. Often LITERAL physical pain, not just emotional pain. I often feel myself falling. Falling with him.

I’m not posting this as a request for sympathy or even as a confession that I did not do enough. I didn’t. I’m not even telling you as a cautionary tale. That if you take that step you will haunt your loved ones forever.

I guess, what I am saying, is what I want to do is go back in time and tell that little boy something else.

“I got you,” I’d say. “You want to take a break? That pain will stop if we just give you a break. I got you.”

I got you. I got you. I got you.

That’s what I want to say. Not “Okay, honey. Then scooch to the left for me. Good job.”

He was a very gifted young actor. He couldn’t cover his stimming blinks until much later, but I think he eventually did. And though, at the time, I thought he had grown out of his touch aversiveness somehow, I think he just learned to grin and take it. That shouldn’t have been the success story we all treated it as. Good job, we said. (Me too, remember, we knew even less then.) When he lost his scholarship for pot use (which was probably how he was dealing with his pain) he somehow fell from grace in the conventional midwestern town he was from. The town that had also bullied him. For being gay, for being autistic, for being weird.

One of the only fights I got into with the administration of the school was when they said that I didn’t have the power to demand the children who broke his crochet loom pay to get him another and apologize. The same children who called him a fag. I backed down because I didn’t have power. I didn’t have power over myself let alone the people who blamed him for bringing it upon himself. So I hid, literally, in the orchestra pit.

I can still remember the look of anger and betrayal on his father’s face.

I didn’t go to the funeral. I couldn’t. I sent letters with my mother who went as our representative, so that THE Burkhalters were in attendance.

I should have known that I would never get to say goodbye, even if I did go to the funeral. Because he’s there. In the wind that I feel in a still room when the pain is at its worst. Wind rushing by, a roar in my ears, as I fall with him. Again and again and again.

I got you, kid.

Is training abuse?

CONTENT WARNING: I am going to be talking candidly about Applied Behavior Anaylsis therapy. Especially in regards to whether or not you should put your autistic child through Behavior therapy of any kind. This is my opinion. This is not black and white, but all the gray. OK? If you can’t handle it, I strongly suggest you move on, with no judgement.

Speaking of black and white, I have a fear of killer whales- because their markings look like eye contact run amock, and because they have the potential to be vicious oceanic killers. So yeah, you don’t judge me and I won’t judge you. Mutual assured destruction right here. You can send me a picture of an orca and I’ll go to pieces.

Ok.

Is ABA abuse?

If you are unfamiliar with Applied Behavior Anyalsis you may be wondering what I have against Swedish singers, but that is ABBA. Whom I love. Pay attention.

I’ve written two posts about ABA, one more postive, and the other explaining the darker side of ABA in more detail. Why do I have so many opinions on ABA? Because my son goes to an ABA clinic monday through friday, practically banker’s hours. More than that, I use the principles of ABA for myself, literally all the time.

So, with that ringing endorsement you would think I am on the pro-ABA side of this argument… I am not.

When people ask or claim that ABA is abuse, I always answer, Yes! And then immidiately, also- no.

I think much of this debate could be answered by changing one word. ABA is not therapy. ABA is training.

Is training abuse? That depends on two factors: the child, and the trainor. I say child instead of trainee because much of ABA is done without the consent of the ” minor patient,” and that right there would most likely bring a lot of people to the abuse conclusion. It does for me sometimes. But then it doesn’t.

Let me explain in a different context. Remember that this is an imperfect analogy. So try to not google search “terrifying orca pictures” until you get to the end.

My older sister is a ballerina. She has studied, performed, choreographed or taught, for nearly my entire life, so, ballet for over thirty years. She is very good. I am intensely proud of her. My heart went in my throat everytime she was lifted by her partner in a performance. My eyes watered everytime she she showed such emotional presense on the stage.

She is a truly gifted performer, with some obvious natural talent. But like I said, she’s been in training for the majority of her life. Did she choose this path? Or was it chosen for her? And was it abuse? (Sorry Mom.)

Is ballet abuse? It certainly can be. Have you seen a ballet dancers feet? (Have you seen Black Swan? That shit was unreal at times, but also very familiar.) Do you know how much my sister sacrificed? Large swathes of her childhood were given up just for dance. Does she enjoy it? I think so. But did she choose it?

Well, ABA isn’t ballet, you might say.

No, but it is a form of physical and mental training based on performance. That is what ABA is- it is performance training. It is training to deal with non-autistic people and situations. It can be extremely uncomfortable. It can mess with you physically and emotionally. But in the end, you have the presense and skill to deal with an unforgiving society.

Oh, so it’s not abuse. It’s just an artform?

Uh, no. It can absolutely still be abuse. Like I said, it comes down to the trainor and the child. Many of these therapists (aka trainors) don’t see it as performance but rather as “recovery” or worst of all, “a cure.” These people should not be allowed to interact with your children. The skills learned in ABA are not the skills of a “normal human being.” They are camoflouge to fit in and understand a world that makes virtually no sense. They are manners.

Manners are not bad, but they are not “normal behavior.”

Manners are performance. They always have been. The difference with an autistic person, is the lack of those nuerotypical manners can cause them lasting trauma. Mostly because the world will punish them for any breach of that performance. Sometimes, with their life. Honestly, if they’re lucky, it will just be their emotional health, and not their physical body. Not like the little boy recently shot eleven times by police during a meltdown. And that’s just within the last few weeks.

I’m not saying this is ok. I would like the world to be so much better. We might get there. We’re in a bit of a culture war at the moment, and the backlash to an inclusive society without ableism is very intense. I just don’t see them changing fast enough to keep my son safe without a little performance on his part.

Here is the key. I have said it before and I will say it again. It is your job, as either a parent, or a therapist, to let the child know that this is a performance. There is nothing wrong with being autistic. There is nothing wrong with our sensitivity. Accomodation should be a welcome and innocuous thing.

If you do not do this, ABA results in a permanent kind of camoflouge. Which ultimately ends up in burnout and pychoisis. Sometimes suicide. And if you are the parent that let them go down that road, treating them as a “recovered autistic.” Well then, that is totally on you. You were unknowing in your abuse, but that kid was traumatized nonetheless.

And if you’re a therapist that thinks they are “curing” autistics. Get out. Just go find another job. Or better yet, rethink your ideas from the perspective of the children you are “treating.”

And some kids just do not have success with ABA. It’s not in their natural temperment. They have demand avoidance and don’t find that the inducement or “reinforcer” to comply with demands is strong enough to balance out the emotional toll. And therefore, that consistent forced compliance is damaging. It will result in trauma no matter how many m&m’s you give the kid.

I have a demand avoidance form of autism and so this would probably not work great on me without constant neuroaffirming support. So I watch my son CONSTANTLY for signs of trauma. I drive his therapists a little crazy, I’ll admit. And I’m constantly working on a back up if I feel that his ABA therapy has crossed the line into that traumatic territory.

But look, trauma is not death. You can come back from it. Start talking about manners and camoflouge and mirroring. Say Autistic with pride. Let them know that no one is “normal”. That we are all acting to a certain degree. Reinforce this with love and acceptance of things like stimming behavior at home. Give them a chance and a place to be themselves. Let them dance.

Yes, let them dance– or to bring my analogy back in a semi-clumsy way–

When you fall in dance, it hurts. And the large mirror they practice in front of? It sometimes shows you something you would rather not see. But it’s there for you to change. To make the small changes that turns something awakward into something with grace.

And if you haven’t noticed yet. I am not talking about the child. I’m taking about us– the movers, the shakers, the deciders, the parents and the trainers.

Is training abuse? You tell me.

Are you pursuing perfection or grace?

Facebook Offical

On the advice of my husband, yes, the John of HollylovesJohn, I’m reposting my recent facebook rant here for perpetuity.

It came about because a very cool person that I follow put up a petition to stop Target from selling blue pumpkin bins for Halloween.

It’s a recent thing that originally derived from the Allergy Free Teal pumpkins, someone wanted to use Blue pumpkins to signify Autistic children. (Who also have dietary restrictions, but that’s a whole other thing.) They thought it might help when someone insists that it’s good manners to say, “Trick or Treat.” When in fact, the trick-or-treater may be non-verbal. It’s a non-verbal cue to Non-autistics to be cool, essentially.

SLP’s and behaviorists will often give out Picture Exchange Commincation cards (PEC) at this time to help with this issue as well. They are about the size of a business card and will have “Trick or Treat” with a pictograph representing the action of trick or treating. In case you get any of those in future Halloweens.

It’s just another thing to help, PEC or blue pumpkin. But for some in the community the blue reminds them too much of “light it up Blue” which speaks to the gender issues in diagnosis, and Autism Speaks itself. A corporate charity which has a lot of problems… That’s a whole other article. I swear, one day I will get to Austism Speaks. Hopefully, when they have done something spectacularly good for the community. So, it might be a while.

Anyway, here’s the rant in all its glory:

“I have a “no flame wars” policy when it comes to the internet. So I deleted a comment that I thought could be inflammatory on someone else’s petition to stop Target from selling Blue pumpkins because of the gendered implications and the connection to Autism Speaks.

I do not like Autism Speaks. And as a late diagnosed adult autistic woman, you can bet it annoys me that being a woman is one of the main reasons I deal with skepticism all the time. That being said. I am super sick of the devisive litmus test that we keep putting on each other.

“Are you wearing blue, do you like the puzzle piece symbol? You must also like eugenics, then. It’s such an OBVIOUS correlation, right?” No.

Seriously.

I can respect that people have trauma with many of these things. Whether that comes from being emotionally [or physically] wounded by well meaning parents [and therapies,] or being inhibited and ostrasicized by the world. This is such a common experience for our community that I have not met one austistic adult that didn’t have some form of trauma. But this litmust test prejudice has gone so far out of just our community and is tearing the world apart.

I don’t think it is a new concept. I think tribalism has always been apart of us. But with the application of politics and capitalism, it is literally leading to deaths in the street. Deaths.

Like I said, this is not new. It’s a pattern that appears over and over again. In Germany, they had Romanticism that led to free love and harmony for generations, acceptance of transgendered people, sexual revolution, abolition and every liberal idea that you have ever thought of as progessive and modern. The backlash of divisive facism and corruption led to both World Wars. I don’t need to cite anything on this because the information is readily available. Go look it up.

(And I am not saying that the Romanticism didn’t have it’s biases and flaws. It did. It just didn’t kill millions of people because they felt inferior. Again, look it up.)

I love my communities: the gay community, the autistic community, the midwest, and even the United States of America, despite its problems. Not to mention, the nerd community– I wish we were a utopia but we aren’t. We are the home of the in-cels… digression.

Look, I’m just “facebook official” disgusted by man’s inability to deal with its own fears and biases. And that comes from someone with a lot of fears, biases, and sensory issues. The light literally causes me to recoil due to my visual hyperacuity. I can hear electricty ALL THE TIME. [I technically also have a really big problem with smells. They will ruin my life if I don’t do something about it asap.] These things have caused me to be angry and afraid, literally my whole life. Because of this I have had to become incredibly self aware. To know why I feel what I feel at all times.

What is the rest of the world’s excuse? Why must you cling to an idea of what’s right because it “feels good” to you? “Knowing what is right becuase you feel it.” That is literally bias. That is literally tribalism. You are choosing acceptance, and the coddling of your own fears and doubts over your fellow man. Literally, everone is doing this. Republican, Democrat, Gay, straight, religious, secular. We’re all doing it.

We’re so concerned with finding our own people that we are literally dismissing and killing our brother to do it. We are stepping on the necks of other people just to feel comfortable in our righteousness. It’s disgusting.

If you made it this far. It’s probably becuase you too feel like you are shouting in the wind. This is not an “agree to disagree and let’s all be friends” request posting. That’s ridiculous. This is “we’re all wrong, and none of us are right. Not until we accept facts over feelings and identity.”

It’s hard to do what I am suggesting. We are biologically hardwired to find our own, for protection and love. Our communities and our tribes are our empathetic herds that understand us. And all of that is fine until you decide to preemptivetly destroy the rights and lives of another tribe because they make you uncomfortable.

I know. All of this over a blue plastic pumpkin. I just can’t stand back and watch us all be manipulated by our own pyschology, not anymore. Be better. Be more self aware. And finally, Nazis are always bad. We should all be able to agree on this.

Has Indiana Jones taught you nothing, people?”


Then in the comments, an old friend bravely admitted that she had no idea what I was talking about when it came to the blue pumpkin controversy. I say “brave” in all sincerety, because people will jump on you for not knowing something they consider to be important. Despite the fact that you live completely different lives, with different prioroties. To me, asking a genuine question is always preffered to a dismisal. So seriously, good on her. And everyone else should follow suit.

Here’s how I explained it to her:

“Teal pumpkins are for the allergy friendly candy. Someone saw that and decided to use blue pumpkins so their adult autistic son could go trick or treating without people treating him like a deviant or a threat of some kind. I’m totally cool with it. I bought three for anyone else in the autistic community that needs one and can’t find it. My son and I use one year round. Because it doesn’t matter to us. It’s just a blue pumpkin. If it helps anyone to be less of a douche to my son, I’m happy about it. There should be less douchebags in general.

The problem that part of the community has is actually with the catch phrase, “Light it up Blue.” Autism speaks has been using this for a long time. It is in reference to the fact that it was thought only boys could get autism. [Boys, not men. Still insinuating that this is a childhood disease that you can grow out of.]

Then there is the issue that Autism Speaks has supported seriously questionable statements and ironically refuses to listen to Autistic people. [The one Autistic board member that they hired to appease the community had to quit because no one would listen to him.] The best example I can give, is when Trump supporters say “MAGA” at liberals. It’s just a dog whistle for some folks.

[Sidenote: I don’t know what bothers me more about this. The fact that the president’s catchphrase has been reduced to an acronym, or the implication that America was better when everyone “abormal” or “brown” was oppressed. It’s a toss up but I’m probably still gonna have to stick with the latter.]

There is a long and sordid history of abuse in the autistic and mental health community, this [also] isn’t new. But as the perameters for diagnosis are becoming more sophisticated, communication should be better between activists and parents but it just isn’t. Because of greed, prejudice, and righteous indignation. Again, nothing new.

I’m just super sick of it […] sick of cancel culture and the bloodthirsty want for conflict where there shouldn’t be conflict. It’s annoying the crap out of me.

Legit. As an autistic person, I cannot handle it. So, the irony is palpable on this one.”


She was very cool about my answer, if you are curious. And many others were super supportive. And I by no means want to rag on anyone that is offended by the blue pumpkins.

I once went on a rage bender about the song “Jesus Take the Wheel”. I found it irresponsible and offensive as a midwesterner. Everyone knows that you turn into the skid. You don’t let Jesus take care of your baby in the back seat. You take the hit yourself if you have to. Sheesh, Carrie Underwood. The buck stops with you. Not Jesus. Especially when you’re highway driving.

… That was weird… I know…

Ok. Maybe I am not not over that one yet, either. And I would like to publicly apologize to my Border’s bookstore co-workers who had to listen to me bitch about that song everytime it got played over the PA. Turn into the skid, Carrie. Turn into the skid.

Oh, and John was right. This did make a good post. Also, I’m pretty sure I get wife points by publicly declaring it. He’s not always right though. Just so I don’t loose my brat “you’re not the boss of me” card in the same paragraph.

I’m getting silly. I need to sign off and go clean my house. Put up some drywall. All that good stuff.

Be kind to each other. Be self aware. Know yourself and your biases. And turn into the skid.

Adaptations

(If you are wondering how my home renovation is going, I will admit it’s stalled. For just a moment. Not because I lack the energy, even thought that is true. It’s because every time I fix something, it reveals another problem. We’re pausing so that our budget can rebuild before I rebuild our walls. But I know this house like a colonoscopy now. So there’s that, anyway, that’s not why I am here.)

No, I wanted to talk about adaptation.

Because I love adaptation.

This is actually a revolutionary thing for me to say. Because every time I wrote an adaptation for the stage, which I have done a lot in the last dozen years or so… I have loved it. Every minute of it. Taking something and transforming it for the stage, or for children, for a completely different audience than it was originally intended for– whatever. It creates a layered kind of art, a collage that is built upon other references and interpretations. I freaking love it.

But I haven’t been out about that love. Because every time that I write an adaptation, some well meaning person says, “Why don’t you write something original?”

And I get crushed. Just a little bit. Because what I heard is, “Why aren’t you original?” Which if you know what it’s like to be autistic, what it is to mirror, you are sensitive to the ideas of honesty and originality. Wanting to both fit in and pathologically trying to not “copy” anyone else.

I had a dear friend who would go through phases of her favorite colors. And so I would make sure NOT to wear those colors when she was going through those phases. I went to buy a plum colored couch with another one of our friends and I paused, horrified that this was the only color available.

My other friend asked, “I thought you liked this color. What’s the problem?”

And I whispered, “That’s her color. I can’t have it.”

My other friend looked at me and rightly called it. She said, “That’s fucked up.”

It wasn’t that my dear friend would have denied me a plum colored IKEA couch, I just had retained such a fear of revealing my mirroring habits that I had developed a kind of shorthand. Don’t take what isn’t yours, my mind said.

It was fucked up. Because plum is beautiful. And purple belongs to everyone. It was both ridiculous and harrowing for me.

But the truth is… I love to share. I love fangirling and finding others to fan out with. I love the collective conscious of a culture that can make connections through references and shared history.

My husband and I are so deep into reference humor that we use cadence as a form of reference. We change the words, but by the cadence we know exactly what the other is referring to. It might be a little more complicated than the usual kind of communication, but we understand each other. (Yes, we are that one Star Trek episode that is basically about echolalia and the evolution of language.)

What is bringing this up? I am writing a steamy erotic romance adaptation of Little Women. Yes, the most precious of all female coming of age stories. I’m making sure they get laid, and laid well. With wild themes like mental illness, queer sensibilities, and lots of kinky sex. People are gonna want to burn me. But I am loving it. Because as Julie Andrews said, “Does Mary Poppins have orgasms? You bet she does.”

Neurodivergent peoples are forced to adapt to a typical society everyday. I might as well enjoy the adaptations that make me happy.

Oh, and Beth lives.

Take that.

Ambition + Disability

I once told my mother that I just didn’t have her ambitions. It was an explanation of why I kept failing and then running away. Sometimes just avoiding things entirely. The reality is that I have absurd ambitions, they usually get me in to trouble. If I was satisfied with things that are simply good enough, I could be more respectably successful.

Sometimes, it reminds me of Charles Baxter’s, Saul and Patsy. An author recommended by my favorite Uncle, who is also a writer and deals with physical disabilities that I will never understand. Anyway, Saul is constantly jealous of a seemingly ignorant couple that “don’t know” that they aren’t successful and seem so happy anyway. I don’t remember enough of the rest, I need to re-read it, it’s a great book. That part stuck with me though. That and the fact that Patsy created a dance that was beautiful because of its lack of movement. That dichotomy of stillness that is actually full of energy-

That’s me.

That’s why it stuck with me.

Jealous of people that are happy with good enough. Still, because my disabilities make it so difficult to act, but the madness within is an unbearable storm of energy, that sees so much, and wants, wants, wants, so much.

Not greed. Accomplishment. Creativity. Longing.

Maybe respectability too.

Everyone wants to be accepted. And if you cannot be accepted because you are an “other” like so many of us that deal with the symptoms of mental health or physical issues, or are perhaps, just different, you have to do it through accomplishment.

You have to do something incredible to be respected as a handicapped person. It’s so wrong, but that is how it is. Autistic people are only admired when they have a “special talent.” (Same with people of color, I am not borrowing trouble.) And though that is the more obviously autistic that I am referring to, I can tell you that I am pretty obvious when I burn out, talking to myself and rocking back and forth, lashing out. Which seems to be more and more lately.

And I guarantee you my apraxic son will be seen as “obviously” autistic, no matter how smart he is. And he is. He is so smart. Even at four. His therapists used to call him a “bamboozler” because he would quickly work the system to get what he wanted, even if it wasn’t the “right” thing. Like a trapped octopus, breaking out of his cage because he refuses to stay put. Not when there are things that he wants.

Society, which could be read as “expectation”, “normal”, and “respectability” caged me long ago, that and my crippling anxiety of rejection. So, I’ve gone back and forth between stillness and mind-numbing mania- creating, creating, creating.

And none of it up to my ambitious, high standards, just a compulsion to release that energy. That need.

Do you know that feeling? I know that you must, some of you. There is too much out there that echoes that feeling, empathizing, showing that we know. We know what’s that like. Songs, books, plays, art, it all knows, it shows that madness. Non-stop, Never Enough. Written, sung, created by people like me, who pushed past their crippling anxiety long enough to let what they created out into the world. To be loved, to be hated, to be ignored- knowing that you would feel each negative sting like a phantom limb, and the positive would never, never be enough.

How? How did they do it? Is it just that one part gets stronger than the other. Or can you transfer that numbness to your response to the world?

I wish I was an octopus.

How Do You Talk to The Mob?

I’ve been watching Douglas, no not watching, studying Douglas by Hannah Gadsby.

If you’ve read this blog you know that I am a fan of the comedian Hannah Gadsby.

Fan is not even a really good word. She is totally my hero, and my face of representation in media. Seriously, add long hair, a bit more femininity, some pansexual man loving, and that is me. Autistic, writer, woman, advocate; lover of puns, meta jokes, and art history.

The one thing I don’t really have of Hannah’s is her courage.

She’s so damn brave.

Because she takes all of that Autistic writer, advocate, and lover of puns, meta jokes, and art history, and performs. Performs globally. And opens herself up to the mob. How does she do it? How does she talk so directly to the mob?

Not like “the Sopranos” mob, or mafia, but like, the literal, mob- in its most classic definition. The majority. Or you know… people…. Today they are most represented by the angry internet bees and trolls that release their rage through keyboard mania and vitriol, screaming into what they see as the void, but in actuality, is a lot of impressionable people. And I’m not just talking about the people that disagree with me. There are people that agree with me, with my exact opinions and politics, that I don’t like to listen to either, because they give me conflict anxiety with their passion fueled, tone deaf, tirades.

I don’t like conflict. I also don’t like letting people be wrong. I’ve talked about this before.

So, anyway, when I was on Youtube a while back, and I was watching an old Hannah Gadsby routine, and I commented, “She’s my hero.”

Cause you know it’s true. And in case she ever watches her old youtube videos, I wanted her to know. I want everyone who also sees her as a hero to know that I am with them. That they are not alone.

And then, like months later, some man was like, “You’re gonna have to get a new hero. She’s not funny.”

And I had a puffer fish moment. If you’ve seen Douglas or have any autistic or sensitive qualities you will understand that. It was impotent rage.

I wasted a full day trying to draft a response. Finally, I just went with the truth and said, “That’s a really weird comment. She’s my hero. Why do you have a say in my hero, stranger?”

And you wonder why I took a full day for that? Because I will bend over backwards trying to understand the perspective of the other person in a conflict. And I was trying to think of what she had done that I shouldn’t admire her for. And then I remembered. That is just some dude on the internet who is smarting from being the butt of a joke. Yeah, no one likes being the butt of a joke, and I can understand that. But Hannah never makes a joke without some truth in it. So, like she says, she’s punching up. Some people just won’t invest their hurt feeling into growth…

So they just point and yell, “Not funny!”

(Yes, that was a reference to John Mulaney, another funny fucker.)

But of course, bending over backwards to understand that man, pointing at Hannah Gadsby, and because of my comment, also pointing at me by association, and triggering my conflict anxiety— I tried to put myself in his shoes and see if there was any comedy or comedian that smarted my feelings but maybe had some truth in it?

The only one I could think of… might be Dave Chapelle? Because he has offended me before. I’ve frowned at a Netflix special and muttered, “I don’t like that.” But he has never stopped being both funny and smart as hell. I can grow from that. I can take myself less seriously.

Like his bit on the the “Alphabet People” which of course meant, LGBT. On the face of it, it was offensive to be called an alphabet person. But the bit was insightful and hilarious.

I’ve digressed a bit, but my original question is, how do you deal with the mob? So quick to “cancel,” to “puffer fish,” if you will. So full of impotent rage? How do you perform for that without having a nervous breakdown? Because I want to do something on youtube or maybe write another play… I want to do something important and thought provoking, but I don’t want to deal with… all… that…

Dave Chapelle technically did have a nervous breakdown. Do you remember that? At the height of his fame, he quit, went to Africa, and smoked a lot more weed. Pretty sure he is smoking weed in most of his specials lately. Which I think… is actually fucking brilliant. I used to use benzos for this purpose (klonopin or xanax)… But after this most recent bipolar episode, I might have to add something less mood altering. Amaretto sours? Maybe weed? Some gaba-inducing supplement? There is always a line at our local weed dispensary and lines/unknown protocol gives me anxiety. So I, ironically, have been too anxious to visit this location to get weed for my anxiety. I think that means that only one of those Dave Chapelle breakdown options will work for me. And what country of origin would I be able to disappear to… because Germany isn’t really known for its warmth?… Joke. I’m sure modern day Germany is absolutely warm and fuzzy, despite its Nazi past. America can’t judge anyone on its Nazi population anyway.

Hannah Gadsby says she inoculates herself by snacking on the hate. And while that is funny, I am not sure that will work for me. But then again… it might be another way that I am like my hero, Hannah. Because the first conflict about an issue that I am apprehensive about it always the worst, I have a meltdown and I deal. And then the next, is not so bad. So maybe that is just a bad vaccine reaction that I have to deal with.

I think, I just have to be brave.

But maybe I’ll brave the line at the dispensary first.

Attic Ladders, Distraction, and Obsession

Today has been a trying day. I had some kind of health episode in Target this morning. I think it might have been low blood sugar or dehydration. I got a bottle of water, some popcorn chips and then acted like the choosiest person in the patio department ever. Earnestly, it made me want to get this awesome chair for my porch. But I think it might make John lose his mind if I brought home a piece of furniture.

(My son is back at school, in this strange new isolation-half-day coronavirus-protocol way. It involves his teachers in full PPE and avoiding all his classmates. The point is I spend a lot of time in Target and other stores while waiting for his half day to be done because I don’t have enough time to go home. We live about three towns away from his school.)

And then when we got home. I decided that I was going to go up into the attic to fix the electrical work. Only… I’ve never been up in our attic. It scares the bejeebus out of me. It didn’t help that when I peaked in, there was enough rat poison to take out the entire cast of Ratatouille.

It was also about six thousand degrees.

And then there was blown insulation everywhere so I couldn’t even figure out where to step if I wanted to…

So I went back down the original 1960’s ladder, when a size 10 was like a modern day size 4, which creaked very rudely. Like an accusation of some kind. Like it knows about the M&M’s I’ve been getting at Target. Whatever ladder. Stop judging me.

And now, I am thinking I am gonna have to enlarge the escape hatch in my kitchen to fix the electric from underneath so that I don’t kill myself falling through the ceiling. Which means an even larger project.

UHHHHgggggg…..

These projects with all their experience and obstacles, can be a form of madness from time to time. And it really points out the difference, at least for me, in ADHD distraction vs. Autism obsession.

Autism obsession is more about passion, and engrossing yourself.

Distraction is a heightened kind madness that causes you to jump from project to project.

Both can be really wonderful and exhausting at the same time. Both can cause you problems as well as accomplishments.

Today, after weeks of heightened distraction due to stress, I feel like that creaky attic ladder…

barely hanging on.

List of Projects

Last post I told you that I had too many projects that it was making my head buzz…

But today, it’s giving me more joy than pain. Which is good! But it’s STILL a ton of projects!

Here’s what I got going on this weekend:

-Organizing office and studio equipment

BEFORE- Living Room/ My “office”

-Mount bookcase lighting

-Set up for screen painting project. This is an exciting porch project that I decided to do inspired by the Baltimore window screens. This great folk art tradition in Maryland. But I think I will actually paint something a little more Georgia O’Keefe and a little less Bob Ross. (No matter how much I love him. I love her too.)

Baltimore Window screens

-put away the clean laundry that has been piling up

-organize electronics and DVD’s so that they are out of my bubba’s reach- he has destroyed so, so many blue rays

-organize toys again, still working on the right system where he can find what he wants independently but also can communicate his needs with us at the same time. It’s a trial and error kind of thing.

-set up at-home therapy/school cabinet. My buddy will be going back to school more regularly soon. But, if anything, this pandemic has taught me that I can’t rely on school alone for my son’s education.

-Change lighting fixtures in both dining room and kitchen, including finding a replacement for kitchen light for under ten dollars. My husband’s challenge.

BEFORE Dining Room Light

The Dining Room light flickers in a way that makes me nervous given our recent wiring mishaps on the porch. Also I want a something with daylight equivalent for night painting. There is no before picture of the kitchen light because it was an ugly industrial fluorescent light that I have hated for years. Not picture worthy.

-Finish the porch project- but uhg! It’s so hot and itchy!

Then, really, just basic clean up. There are crumbs everywhere. And Amazon boxes. Not as many boxes as there are crumbs. But that’s still a lot of boxes.

Most of these projects are just me trying to regain some control in an out of control world. But either way. I’m feeling good about it.

Autism and Affection

There is a social media post going around, that I technically don’t want to share because, hopefully, it was written in a bad place. Something a caregiver would like to forget that they had said and done on a very public forum.

Essentially, he or she was musing on the lack of connection and “innate self centered-ness” of autistic people, and that their child would never love them and it was all about “yellow lights, fairy princesses, silly repetitive cartoons, and chewelry.”

Now I understand being tired, but yellow lights, fairy princesses, and silly repetitive cartoons still sounds pretty damn great.

And my beautiful boy is the most affectionate little guy I’ve ever known autistic or not. He finds all the non-verbal ways to show affection and love. He kisses my cheek about fifty times a day. Pets my arm or holds my face to show he misses me or loves me.

I wish I could hear his voice. I wish it everyday. But connection and affection is more than just language. Listen harder, my friend.

I can’t… But I will

I’m having an “I can’t” mental health day which is inconvenient because I have a lot to do. Is it strange to be embarrassed by how much bad luck we’ve been experiencing personally, when there is so much worse going on globally?

Like every tele-therapy session I have for my son, when they ask how things have been going I have to explain-

“I had an allergic reaction that made my hands virtually melt.” Or “There was a small fire in my DIY renovation.” Or “A pipe burst when I was trying to change the garden tap.”

Little did I know when I took this before picture that this tap would blow up my life. And would lead to several other issues.

Or “two of the four appliances in my kitchen are broken and I have to fix them with grit and youtube alone.”


“I’ve been electrocuted twice despite turning off the appropriate breakers. Can’t find my voltage detector, obvs”

That looks safe, right?
I didn’t think so either. Fire in 3…2…1

“Carpenter bees keep attacking my porch, despite the fact that I bought them their own little bee home. I punted one out of the air with my boot and I swear I heard it curse at me in bee language.”

“I keep telling my son that he has to have shoes on in the construction zone, but he keeps ‘losing’ them. Which means he hides them. But I am legit scared that he could get blood poisoning from the dirty sharp nails and jagged discarded siding.”

“I just confiscated a bunch of magnets he was trying to eat. Bubba is inconsolable.”

This was taken before the magnet-gate but I’m pretty sure he was annoyed at me for something else.

“My husband has pronounced a fatwa on the renovation, and has forbidden me from talking about it to protect his own sanity. Understandable, it really is. But also embarrassing. It makes me feel like our This Old House issues are somehow my issues because I want to fix them, not ignore them.”

“I can’t feel my feet. And my joints are so angry at me. And my allergies keep making my lips swell up and sting.”

It’s embarrassing. And embarrassing means something else entirely for me. It means, I get overwhelmed and raw and vulnerable, when all I want to do is a have a safe place for my son to play on our screened in porch- because we don’t have a fence, and he’s been starting to elope into busy streets on our walks. So suddenly, a safe entertaining play area becomes a matter of life and death because I can’t sprint as fast as my four year old.

Serious moment. This could have been the last picture of my son and I. I took it by accident when he was ripping his hand out of mine to run into the street.

I know that it’s gonna be ok. I can already feel my meds kicking in, and taking the edge off that vulnerability. And my small porch fire that I was able to stamp out with my gloves is nothing compared to the fact that Minneapolis is blazing.

It’s gonna be ok. Just for right now… I can’t.

But I will.

Instagram, Family, and Special Interest Paintings

I have been staying up WAY too late these nights. Mostly because of my darling son, but also because of my new social media love- instagram. Oh man, is it addicting! But honestly, one of the biggest things that I am really grateful for when it comes to instagram, has very little to do with pretty pictures. Ok, well actually it has a little something to do with it and I will get back to that.

Mostly, I am grateful that it has allowed me to reconnect with my aunt.

This is my Aunt Mary Anne…

Mary Anne or Mae West?

She did this Mae West Tribute show for a long time, and then did some vintage music shows for assisted living facilities where they would appreciate it the most. Which means that she was caring about these older people before they were in danger. Which to me, shows that she was ahead of an all different curve, you know basic humanity and compassion.

She is my father’s sister and the very same aunt I told you about at the beginning of quarantine when I was worried about who I was gonna lose to this sickness. In that post, I also told you about the grandmother that I did lose, shortly after I wrote that, actually. Which meant that when I saw my aunt posting her work outs on instagram it was like I had to see her. I didn’t want to miss my chance with her, like I did with my grandmother. In fact, there is this strange connection that whenever I see her picture, I think “grandma.” Not because she is old enough to be my grandmother, no. It’s just this impetus. It’s like the word “grandma” has become “don’t wait.” Don’t lose her too.

Now, I am not saying my Aunt is going anywhere. She’s incredibly healthy. She does these stair climbing marathons and is doing a virtual one to raise money for Leukemia, her team is called Stair Down Cancer. (Love a good pun.) I just really don’t want to waste anymore time with her.

And seeing her virtually is good enough during this crisis, like I said, despite being ridiculously healthy, she is older than my father. And my uncle, the writer, has MS, and is a quadriplegic. He also has a great blog about their adventures in a handicap accessible RV from a wheelchair perspective, called Wheelie Out There. I think that pun alone shows you how great he is. (Seriously, love a good pun.) But it also shows you that I want them to be safe in this uncertain time.

Picture courtesy of his blog, Wheelie Out There.

Sidenote- When I first met my Uncle John I believe he had a cane. Then a walker. Then a motorized scooter, and now a wheelchair. The interesting thing about that, is that none of my memories of his mobility aides are bad ones. Sure, I didn’t want that for him. But his presence has never been a sad or tragic one. When it was the walker, I remember him showing me the “grassy knoll” in Dallas as we looked over the fence where a “second shooter” might have been. When it was the motorized scooter, I remember him nearly plowing into a hissing goose outside his apartment, a war whoop of glee on the air. What I am saying is, despite his difficulties, which are enough to destroy most people, he has a tremendous spirit. He also skydives. So there’s that.

We’ve made plans to get together once they swing through my little town. And I’m pretty happy about it. Honestly, I’m just hoping I won’t burst into tears when I see them. Undiagnosed autism and other mental health issues can be so isolating. The best thing about getting diagnosed (and the proper medicine) has honestly been “coming out.” It allows you to get over yourself a bit and go after what matters to you. My family will always matter most to me. So it’s like a starting pistol has gone off, and I want to go see everyone. Too bad it happened during a quarantine. Nonetheless, I’m pretty pumped.

I’m also pumped about an idea my aunt gave me over instagram. I was posting some of my old paintings which included this teacup painting I did for an antique shop.

And she suggested that I create painting of rare teacups for collectors. And while I am not sure that I want to necessarily go the teacup route, because rare teacups are usually quite intricate, and would not really be my.. ahem…cup of tea, per se, I really loved the idea of painting a piece that a person might collect. Because you will often find that autistic people are collectors. This also made me think of the other unique special interests that people on the spectrum have. I think sometime in the future I would like to do a series based on such an idea, highlighting those special interests and elevating them into art.

Do you have a special interest that you would like a painting of?

But maybe, more than that, do you want to see your family more? It’s hard living with mental health issues, like I said before. And hopefully, once all this is done, and it’s safe to be with each other once again, maybe it doesn’t have to be so isolating.

Maybe it’s not too late.


The painting is by Salvador Dali. It’s inspired by Mae West, the real life actress my Aunt has made a career out of impersonating.