Tag Archives: neurodiversity

Another Day In I Am Too Tired For This Shit

My bed is 7’x7′. How in the hell does a child turn sideways then fall off the bottom?

Yesterday MC had their first visit for assessment to see what sort of neurological testing will help find the correct diagnostic labels so that I can narrow down my research on how to support them better.

It was a good visit but, I think, not what the lady had planned. She had a sheet of questions to ask. Instead of going through those questions MC went through a prepared list of the things they have a hard time with. She flipped her paper over and scribbled like her life depended on it. She scheduled an appointment for me to come back alone and fill out those questions about developmental history. 😂

I had talked MC through how I handle appointments as an adult who does not have anyone to report on childhood milestones/attainment. I forgot that MC is not having my life. Whoops. It’ll be fine.

MC is automatically getting 3 separate assessments based on clinical presentation in this appointment and the intake lady hinted about others that might be relevant after we can actually go through developmental history with a fine toothed comb.

This is how seriously Stanford took EC. I was deeply worried I would not find a way to access similar granularity of help for MC/YC. Stanford did *not* take MC seriously. Stanford asked MC 20 yes/no questions and told me I had a perfect little boy I didn’t need to fix. That was really frustrating. This time the lady watched MC almost vibrate off the chair and noticed “Do you find that you are ever able to sit still?” Only if the kid is in a severe dissociated state because they are imploding under the weight of their own anxiety and it is combined with mutism. No. They can’t just hold their body still like a “normal person”. It is not possible for them.

I am feeling a lot less nervous about this process now. The lady also took it very seriously when I said I have two other children who are also clearly neurodivergent. I don’t know what will come of her making notes about my other kids as well. YC isn’t even on a waiting list at this point.

YC’s flavour of neurodiversity is pretty easy to accommodate within our already heavily modified for neurodiversity lifestyle. EC is doing really well with the structure we maintain. MC needs… something I’m not doing and I don’t know what. I am grateful that the NHS is trying so hard to help me figure out what I should do.

The lady looked really pained when I talked about my own history of being beaten up in school after school and how I was not even a tiny bit surprised when people beat up my children in school. Autistic people are magnets for bullying behaviour.

Human beings often want to hurt people who are different. It’s a thing. A really sucky and terrible thing. I was glad that she showed absolutely no sign of believing that it would be best for my children to be in school. *phew*

Stanford Child and Adolescent Development was quite adamant that there is not a better learning environment for EC than what I provide. They had tiny tweaks to suggest, but nothing major. I hope that the NHS can help me find the tweaks that will give MC also the best learning environment for them. Right now there are a couple of areas that concern me and I don’t know how to fix them. I do need outside guidance.

It’s kind of funny that EC doesn’t mostly overlap with my learning difficulties. His troubles are out in front of me and I can study them without feeling emotionally connected. I just need to support. MC and I share some of the same struggles. The ways in which I have never managed to overcome some of my own challenges inhibit my ability to figure out how to help them make progress. I need a more objective view.

But first I need to go run 4 miles. I’d rather eat glue.

I hit the wall this week. I think I was lowkey sick over the weekend when the kids were all very sick. I kept exercising and working the whole time. I don’t feel like I’m still dealing with a fever but my body wants to tell me to go take a long walk off a short pier. I can’t even tell how much this overreach is about physical load and how much is emotional load.

I feel like my soul is hurting. I miss the physicality of all of my California friendships.

It is already getting much colder and I am not feeling great about the change. My body is hurting a lot. I felt like the tiny increase of warmth of spring was a huge massive welcome change and I was going around outside in skimpy clothing because I was overheating. Now the same temperature range is making my bones ache.

I am not sleeping enough. I am rarely laughing and that can’t be good for me. I feel somber and like I have a flat affect. I feel numb. How can you feel numb and pain at the same time?

I really need to go run. I feel like that is an absolutely outrageous ask just now. Oh well. What I want is not important. What matters is what I do.

cross-post Problematic People

from fet

Oh man my RSD is on turbo lately. (That’s Rejection Sensitivity Dysphoria if you aren’t familiar with the acronym.) I learned about this facet of neurodiversity in later years and it was like “Huh. Ok so that’s been most of my life. I just thought I had low self esteem.” Which is why I often feel weirdly haunted by the memory of a therapist who laughed so hard she almost fell off her chair when I said I had low self esteem. She said I had the highest self esteem of any client she had worked with in over 20 years.

Right.

What does self esteem mean then? I don’t think I really understand. I have aspects of my self-hood that I have confidence in: I can giggle off aspersions about my intellect because I am ridiculously confident in my intelligence and I laugh about people implying that no one would ever fuck me because holy hell is that inaccurate.

But I doubt whether I am actually doing enough good in the world to justify how many resources are needed to keep me functional. I have a shitty, high maintenance body. I doubt whether people will really accept me with all of my fierce outbursts and intensity.

So as a result I really like a lot of folks who are publicly derided as “problematic people”. I prefer assholes because they will tell me off and compliment me in equal measure and I can lean in and rest my head on their chest and hear the authenticity of their love in their level heartbeat.

“What’s Wrong With Krissy” is, after all, one of my most frequent games.

This ties in strongly with why I pursue friendships with folks in the scene with such intensity. There are an awful lot of assholes around here. YAY!!!!

Hell, even the people I know who have mostly done the right things in life and followed all the choices they were expected to make are still people who get in trouble regularly for being overly direct. I think of them as assholes with extra class. They will still tell you off but they will do it in a way that no one is allowed to tell them to stop because it all just sounds so true and reasonable.

It is harder to find assholes around here (physical here not fetlife-here; I come to fetlife so much these days because I can smile and watch assholes). A lot more “taking the piss” and a lot less “I am going to tell you why every single thing you have done in the last 15 years is wrong. I have citations.” One of my old buddies had to leave the bay because of health issues. Now the trouble is that they are used to friendships that are super intense where folks act like mutual coaches to one another. This is a really common dynamic I have had in many of my friendships in California as everyone is striving super hard to learn new skills and hobbies and interests all the damn time. My buddy is really struggling because no one in small town New Mexico wants to do that with her. People A) don’t want to spend that much time together and B) are not interested in that dynamic because they aren’t relentlessly focused on learning new stuff and C) find it more than a little creepy that my buddy is so intense.

I feel that in my bones.

I feel overwhelmed almost every single minute that I am with folks that I need to be trying as absolutely hard as I can to hold back and not be too intense. My entire selfhood is wrong at full strength and I need to be letting it out 3%-5% at a time or I am a monster. It is additionally challenging that many of the ways I have traditionally talked people into having more tolerance for me are prohibited by agreements I have made. Also: I don’t think they would work so well at this point.

I am a Problematic Person. What do I do that is problematic? Talk too much. Not moderate eye contact sufficiently (holy shit this is a whole thing here and I’ve had immigrants bring it up with me and tell me that I need to knock it off because they get in trouble for staring too). That one is really hilarious because I had to be taught to make/keep eye contact and now I’m in trouble for doing too much of it because PEOPLE ARE NOT CONSISTENT FROM CULTURE TO CULTURE.

So, when you are instructing that autistic person on how to act to “not be offensive” what culture are you acclimating them to and how did you develop the fucking audacity to decide that whichever one you are enforcing is The Right One? Anyway.

How close am I supposed to stand to someone to look friendly but not be creepy? How do I manage the fact that my fucking tinnitus is so bad that half the time I am trying to understand people with about 70% of the words making it through to my brain? It is why I love to type. How much follow up when they are not responding is persistent and appropriate friend making behavior but when do I become a stalker? I have no fucking social credit here. I have not earned forbearance because of my long usefulness. I am a difficult outsider with a lot of demands in order to facilitate my entry.

Yeah… basically I don’t see much reason to assume that dealing with me is worth peoples time so I minimise how much I interact with people because I do not want to unfairly drain them. I have been told for years that it is not ok to give any kind of social or energetic labor with any expectation of getting anything in return. You need to just give because you have extra and probably nothing will come back to you and that needs to be ok. I have to be ok if I never get anything from anyone.

And so I sit at home and I make detailed calendars and lists of tasks for maintaining my body and whatever shred of mental health I clutch to and I pray that no one asks me for too much because I am running a surplus… barely. I am after scraping and working and hoarding and conserving and doing without. And there is this knot of worry in my stomach all the time because I am trying to put small amounts of effort into different places and people because I have to be ok if this person/group does not want to know me in three years.

There will always be people who don’t want to know me. No matter how much of my personality I saw off. They will see the mistakes I so profligately make in my haphazard pursuit of new understandings and they will not know about any of the previous history of doing exactly that before succeeding at very hard things that many people said I was not going to be able to do.

I am nobody. I am a stranger. I have no value. I have no perceived social status.

I mean, I did pick this on purpose. I made the conscious choice to pick up and move very far away to be a small fish in a small pond because I did not enjoy being a small fish in the great big ocean. They were going to eat me.

I chose to move very far away to a place where I have exactly one embedded social contact and her world has been fairly limited in her time here. I have to try and find a new place in the community. I have to find a way to have people see me as worthy of their time and effort and accommodation because you would have to fucking lobotomize me to make me easy to be around.

So mostly I just don’t go. (I am loving the fuck out of the fact that someone ranted about starting sentences with “so” and I absolutely know I am doing it extra right now just to be EXTRA.) I am a problematic person. I am an asshole. I am high effort and what I have to give is very small so it isn’t worth much. Which ends in feeling like I am not worth very much. Then I talk to people less and less. I hide and stay home and keep myself busy trying to add to any surplus of energy I might have so maybe I can have more to give and be less of a waste.

That cycle rarely goes well. It doesn’t work. The ball of tension in my stomach eats away at the surplus making it smaller and smaller until I make myself sick and then spoon deficit is days away.

So yeah. If you are ever wondering if I dislike you and that is why I don’t initiate more conversations… probably not. I’m too busy contorting myself into awkward positions around the pain in my belly to notice enough to dislike. When I dislike someone it is pretty dramatic. You won’t wonder. It’ll be public. It is part and parcel of a thing that has been repeated at me for almost 30 years now in a wide variety of settings: “You know it wouldn’t kill you to try to be friendly with (person I dislike). “But it might. Best not to try it.” Mostly I don’t bother to dislike people that much. I have conflicting feelings about people. Sometimes I detect signs of patterns that freak me out but it’s usually combined with other random positive traits and I have no idea if my gut feelings are real or if I’m just a dick. In that case I will be consistent in public and private. I will tell you how I feel about you. Often even when you don’t want to know.

Yup. A problematic person. Hard to know. I know how many thousands of hours I put into my extended community in California. In the next 20 years of my life I will not be able to come close to matching any of the similar time spans in California. I’m older. I don’t have a job. I don’t go to school. The social community up here is very different and my ability to access what exists is almost nil. I don’t drive here and I drove all the forking time in California maintaining a network of relationship that spanned thousands of miles on a regular basis. Now I very seldom get more than 5 miles from my house. I don’t go farther than 5 miles from my house in every month. I had very few days in California where I didn’t go farther than 10 miles from my house throughout my entire 38 years living there. We were car people. That’s life.

I can’t anymore. My thumbs are jacked. I can’t grip a steering wheel without overwhelmingly agonising pain. I swear I am not just a pussy. I can’t do it. I know people are surprised that I can do all of the other things I do with my hands, but I have no more connective tissue left at the base of one thumb and very little left in the other hand. It’s bone on bone. Gripping things in different ways doesn’t use my thumb and the rest of my hand is fine. When I say I can carry something I’m not usually doing so at risk of strain to my existing problems. I am strong in many ways. But I can’t drive. I can’t create a wider social community by visiting people. The train takes a whole day. It’s hard to take whole days away on a regular basis. That is not how my life is shaped.

So I am putting drips and drabs and tiny bits of effort towards trying to exist in the wider water network around me but mostly I am in my tiny pond swimming around. The little tributaries that occasionally erupt that might allow me to move around are a little scary.

Being problematic is a complicated thing. Why don’t people just act right. Why can’t you just give more. Why can’t you just complain less. Why can’t you just need less. Why can’t you act happier.

Because because because….. because of the wonderful things I does. (Leave it alone. I did it on purpose. Don’t point it out. Requiring verb agreement in order to “understand” is elitist. Don’t be a brat.)

It’s all about rhetorical effect, isn’t it? There are times and places to insist on really precise language and phrasing. It’s taught when you go to school for that thing. I mean, I did teach English grammar as an English teacher. I was also correcting the other more senior teachers on staff because apparently I actually learned what was drilled into my head at university and when I am writing an MLA standard paper I will trot that shit right out.

This is not a space governed by the MLA. I am looking to communicate. I am looking to communicate with the kind of people who like and appreciate who and what I am and my native language is typing. It is the only one that taps into what I am really thinking and feeling and I have never found a way that works in anything like an equivalent manner with my voice. I feel stupid all the fucking time because I just cannot word. I am trying to analyse all the time whether or not I am doing something “right” for the setting I am in and I feel like I am going to hyperventilate because of course I am fucking wrong and that’s why people don’t like me and fuck.

Why did I even leave the fucking house.

Because that little do-si-do around the fucking topic of grammar is exactly the kind of tiny little thing I feel in my head all day long. HOW AM I SUPPOSED TO BE FUCKING CONFORMING TO SOME STUPID BULLSHIT RULE THAT I HAVE NEVER FUCKING HEARD OF NOW.

WOULD YOU LIKE SOME MORE FULL STOPS WITH THAT………???????????!!!!!!!!!!!!!!

Phew. I think I have been having some feelings. As stupid and immature as it sounds I feel strangely better. I didn’t go start a stupid argument and dump my feelings on someone. I did stand in my sandbox and I had a stupid feeling. I’m not hurting anyone.

This stupid calculus is involved in everything I say and do all day long. With my kids. With my spouse. With my neighbors. With people in the scene. With people on fetlife. With my actual blog I write with a slightly different “ideal listener” focus in my mind… it’s hard to explain. Well, not really. On my blog everyone is expected to know what Noah knows and here I don’t do that. Writing there is joining the stream full force and I have been feeling incredibly unconfident about doing that for a while. It’s a much larger thing to walk that deep into my brain.

Here I do try to keep the word count down. I swear to cheese. I try to pick a topic. I try to bring it full circle and actually find a little closure with it. It’s an essay, kinda, not just me thinking and planning and existing into the ether the way I do in my longer form writing.

The point of this essay was to demonstrate a fairly small fraction of just how much can go into being a problematic person. Maybe 5% landed here? So much censoring and picking careful examples that won’t repel the target audience by maybe sounding too close to home and thus like a preconceived dislike thus they should avoid me.

My personal ad was something like 15 pages long and I didn’t respond unless it was fucking clear you read the whole thing. I think my standards are getting more reasonable with time…

The class should be able to run without you

I just thought of something. A long time ago, when I was doing an assistant teaching gig in a middle school, my mentor gave me a book about how one of the most important things you can do as a teacher is to have thoughtful systems for how things will be done throughout the class day that you follow absolutely rigidly. This is so that going through the experience is so rote that you don’t even need to tell them to do whatever the next step is after a short time–they know.

I have been doing very poorly on that lately. As I say often to my oldest when he is trying to solve a problem, you are getting stuck in the weeds instead of looking at the big picture of the forest.

I am not modeling coping skills for living in a neurotypical world as a neurodiverse person in a conscious and deliberate way. I am hiding to do all of my regulation and that is opaque to kids.

It’s kind of interesting because we do talk about other aspects of mental health. Every so often a child (ambiguity there) will start acting out in some way and we will have a chat where I remind them that we don’t have easy access to therapists here so we have to actually talk to each other and figure things out. I acknowledge that I am not their therapist and I never can be because I am not a neutral party who is entirely on their side. I have my own agendas and biases so that means I am not the same thing and I’m not as good… but I am what is here. So far these sorts of conversations have ended with someone feeling like they are a little bit more ok and that’s all I can hope for.

But I’m not showing them how I organise information in my house. I narrate it quickly on rare occasions and that just isn’t the same thing. It’s not fair. I’m not always regulated the way I should be and I have a lot more experience being taught how to regulate myself. We don’t always figure these things out intuitively.

When did I learn these skills? I was always a real sucker for a school planner. I filled those bitches out. That allowed me to information dump like I do in my blog in the most nascent of forms. I blame you, middle school. My kids haven’t really had that experience. We do use Google Calendar but it is not the same. It doesn’t force you to organise your mind every time you look at it. You have to go turn on a computer/phone and check it. Yeah with a paper planner you have to open it and look at it but that part was always the easy step for me. I compulsively had the fucker out. Every hour or two I had new shit.

I am feeling especially pent up on the swearing front. I’ve been feeling so bad about all swearing around the kids that I’m doing way less and feeling weird about it. Also: conservative people in this community will judge. So, hello anxiety.

So yeah. I need to do that. Come on Krissy, get your shit together.