skitter-critter123

[skitter-critter123]

Sitting cross legged keeps your blood pressure steady? I’ve run low my entire life but rarely have issues because I sit cross legged no matter what. When I do have issues it’s because I was lying down and got up way too quickly

It's kind of a joke in the dysautonomia community that we all sit like pretzels and didn't know why until we got diagnosed -- we were unknowlingly keeping our blood up in our core.

Another fun thing I learned is that jaw clenching can be attributed to subcocious vestibular regulation. This has now led to a rather chicken or egg discussion in both the vestibular and TMJ medical communities because some people believe untreated TMJ leads to vertigo, while others are arguing it's the vertigo causing the TMJ.

Bodies are neat. Confounding. But neat!

[skitter-critter123]

Hi! Now I'm suddenly wondering if you might know anything about the supportiveness of air-alternating mattresses (specialist pressure-relieving mattresses)?

Just sheer curiosity as an almost-graduated occupational therapist. I figure they're probably well outside your wheelhouse but figure i might as well ask!

What are your thoughts on air mattresses? I couldn't find if you've answered or not.

I need to add an addendum to the guide cause I get this one a lot. Basically what I think about any given bed comes down to back support.

Can the bed push back on your lumbar to keep your spine aligned.

In the case of air- no.

In the case of water- no (although I did like how warm water beds were in my childhood)

In the case of bed in a box- maybe for a while but not long term.

This doesn’t mean a few nights on an air mattress or hammock or whatever will kill you especially if you’re under 30 but you’ll start to feel the lack of support long term.

[skitter-critter123]

I have this! I always forget the name of it. My doctor told me it's more likely to occur with poor posture and i certainly get it less often now my posture's improved, though it still occurs.

silliest thing about my body is that I regularly experience precordial catch syndrome, which is basically the medical term for an extremely painful "twinge" in your chest cartilage that's not medically significant & which we can't really explain.

anyway, mine falls in the extreme in that the "twinges" can last several minutes and they range anywhere from "agh, minor inconvenience, I just need to sit still for a moment" to "this is the worst pain I've ever experienced in my entire life, the ethical thing to do now would be to shoot me."

the problem is, when it's the latter, I literally look deranged. the "catch" comes on so fast, mid-breath, I gasp in sudden agony, clutch my chest, and seethe in agony as I struggle for as much oxygen allowed in the shallowest breaths possible. sometimes it's so bad I end up on my knees or even lying on the floor, basically writhing in pain, clenching my teeth like I'm turning into a werewolf or something. and of course people are terrified. they're asking what's wrong, but I can't talk. They're asking if they should call 911, and I'm just shaking my head and holding up a "just a minute" finger and also groaning in anguish,

and then the silliest part of all is that the minute it ends, there's no residual pain. not even the ghost of it. it's gone as suddenly as it came and I catch my breath and I say, "WELL! Anyway," and I immediately try to get back to the conversation but nobody's ever quite receptive to that for SOME reason

[skitter-critter123]

do you have like. resource recommendations for conditioning your body? i can't put weight on my wrists and standing hurts the instant my feet touch the ground so exercise kinda feels impossible but i want to be able to fuck my boyfriend

Yesssssss okay so I also can't put weight on my wrists and baby have I got some sex toys for you!

It's a combo of accommodation and effective medical care so lets break it down

My fellow arthritic sluts, I *know* you know how bad the joints get when we fuck, so if you don't already know, let me introduce you to the world of Position Aids:

You know what I learned being a disabled bitch working in shipping? Never muscle your way through something your body shouldn't do. Accommodate, facilitate, and meet yourself where you're at. The less you fuck yourself over by injuring yourself doing shit you ain't ready for, the faster you will improve/reach the upper levels of your capacity

So are you like me and the stabilizer muscles in your thighs have atrophied to shit but you still want to ride your girl's strap for some hot trotting, make or buy yourself a seat to help you lift your hips during sex. Buy yourself a doggie-style sex strap to get a better thrust going for your partner without hurting your joints trying to keep a grip by hand. Get a wedge pillow to angle the bottom's hips better for penetration

Sometimes the problem isn't you, I promise, disabled people have been fucking since humanity has existed and we'll keep fucking until humanity is dead and gone

And like, position aids are used to help able bodied people do wilder sex shit, but YOU can use it to help you do more routine bits that are harder for you. Like, it took me almost a year after my gallbladder surgery to have the core strength again to do any kind of sex other than pillow princessing, and when we started using straps to give us leverage on each other, suddenly it wasn't as hard to throw it back you know?

Conditioning for this kind of stuff is best thought of as "functional body weight resistance training" and literally???? Go to a doctor, ask for a prescription for PT to build stability. Tell them you've been falling more and you're worried the next one'll be bad. Ideally, they're gonna send you to someone who will assess and prescribe a physio routine for your core and stabilizer muscles. Once you've got that routine, start to learn WHY you're doing it, ask the physio questions about what muscles are being targetted and what those muscles do. Ask questions like "if I'm kneeling out in the garden for too long, sometimes I get stuck or it hurts a lot to get up, what can i do about that" and your physio doesn't have to know that "the garden" is your girlfriend's pussy, it's all good.

Position aids and physio aren't you're only options even! But they're good places to start!

[skitter-critter123]

Not to go "if you have ADHD just go for a run" or anything, but I am so serious if you have ADHD you should regularly go outside, no headphones no phone no nothing and just stand and observe for a while until you've had enough. Not until you get bored, until you've had enough. Drink your coffee without watching tiktok. Have a bath without music. Turn down the volume in your headphones. I cannot overstate how much learning to be bored is cruicial with ADHD. Life is not just about pleasure, no matter what your dysregulated dopamine system thinks, and when you teach your brain to be okay with being bored, then boring tasks stop feeling like torture. By letting yourself be bored you are yoinking your system out of the high/low binary and allow for the highs to feel like actual highs and not just anything that isn't low. I am so serious go literally touch grass. Listen to the sounds in your flat. Stimulate your body the way it was designed. It lowers anxiety and makes you feel like you're real and best of all it's completely free

[skitter-critter123]

Not to go "if you have ADHD just go for a run" or anything, but I am so serious if you have ADHD you should regularly go outside, no headphones no phone no nothing and just stand and observe for a while until you've had enough. Not until you get bored, until you've had enough. Drink your coffee without watching tiktok. Have a bath without music. Turn down the volume in your headphones. I cannot overstate how much learning to be bored is cruicial with ADHD. Life is not just about pleasure, no matter what your dysregulated dopamine system thinks, and when you teach your brain to be okay with being bored, then boring tasks stop feeling like torture. By letting yourself be bored you are yoinking your system out of the high/low binary and allow for the highs to feel like actual highs and not just anything that isn't low. I am so serious go literally touch grass. Listen to the sounds in your flat. Stimulate your body the way it was designed. It lowers anxiety and makes you feel like you're real and best of all it's completely free

[skitter-critter123]

You know what? It’s fucking hard trying to get better. It’s exhausting managing doctors appointments, doing daily PT exercises, eating better, trying to exercise, trying to meditate, and doing ADL’s. I have had a bad crash per week trying to juggle and do all of the above.

It’s easier and less acutely painful to just coast and not actively work on ‘getting better’. Is the work worth it? I don’t know yet.

But to people who’ve tried and given up, to those who don’t even bother - you still deserve care and compassion.

[skitter-critter123]

We're struggling to set up our aac. Has anyone got any advice to help us? We've only ever used low tech aac before

[skitter-critter123]

people way underestimate the needs of wheelchair users.

there's a lot of what I'll call walkism (bias towards pedestrians and against wheelchair users) among disabled pedestrians (people who primarily walk, assisted or not, as their means of mobility)

diminishing our needs is walkism.

people within the community see us as ableds minus legs. they see our disabilities as simple- just can't walk, it's that easy. they see us as having low accommodation needs and as having the accommodations that we do need met. they see our access barriers as being as simple as ramps and curb cuts.

we are frequently compared to low support needs (LSN) non-physically disabled people by ablebodied disabled people and physically disabled people alike. we are compared to people who walk through life (literally) with little to no support, who make it through school with minimal accommodations, who have access to the whole world.

people are so incredibly out of touch with what wheelchair use actually looks like. people don't personally know wheelchair users, often don't even follow them on social media. people assume they can understand our entire lives by looking at our wheels and imagining. that doesn't work.

this belief that our disabilities are simple especially goes for paraplegic wheelchair users who are so often used as the "closest to abled" examples. they don't consider how many paraplegic wheelchair users experience things like spasms, chronic pain, bladder spasms specifically, both urinary and fecal incontinence, among much else that I'm sure I'm not aware of as I am not paraplegic. they especially don't consider that fact that wheelchair use is absolutely not close to abled.

they don't consider the extent of needs that full time and near full time wheelchair users experience. have you ever had to wait in the grocery store parking lot for 30+ minutes so an accessible spot with an access aisle could open up? how deep is the washing machine in your apartment? how large is the room it's in? is your sink too tall? what about the cabinets? how high is your bed? how low is your dining table? how easy would it be to fit a wheelchair in your car? how reliable is your bus? how reliable are the people on it to not put their groceries in the wheelchair spot? does your workplace have a ramp?

when people become wheelchair users they often have to uproot their entire lives to rebuild in a way that allows them to access things as vital as their home and workplace. when people already are wheelchair users they experience shortages of everything- jobs with accessible buildings, apartments they can get into and use, cars they can put their wheelchairs in easily.

this isn't even getting into things like access to businesses and other locations wheelchair users may want to go.

wheelchair users always have significant disabilities. yes, always. yes, even that disability you think is mild. people don't end up as wheelchair users because they have mild chronic pain or lose balance occasionally. people end up as wheelchair users because they have significant mobility disabilities. significant mobility disabilities rarely act alone. I cannot name a wheelchair user who only experiences mobility disability. everything, yes, everything comes with other effects.

while I've spent a lot of time talking about the comparatively low support needs wheelchair users there are high support needs wheelchair users as well. people only look at those of us who have ability to do all or most ADLs with our wheelchairs, this is not the case for every wheelchair user. there are wheelchair users who use group 3 powerchairs. there are wheelchair users who transfer via hoist. there are wheelchair users who need to control their wheelchair with their breath. there are wheelchair users who can't move their wheelchair independently at all and rely on someone else to push them. there are wheelchair users whose disabilities cause significant disability in areas other than mobility meaning they have feeding tubes, ostomies, suprapubic catheters, and ventilators. these presentations of disability are not even uncommon.

true high support needs wheelchair users are so often erased from every conversation (including conversations among wheelchair users) but I have not once seen a pedestrian mention quadriplegia & tetraplegia or muscular dystrophy or spinal muscular atrophy or any other number of conditions that leave someone needing both a wheelchair and very high support. I never see mentions of intellectually disabled people who use wheelchairs for conditions connected to their intellectual disability and I never see mentions of conditions like sanfilippo syndrome.

ultimately though, wheelchair users are just not a monolith. I will stand by the fact that, while some wheelchair users may have low support needs compared to other wheelchair users and high support needs neurodevelopmentally disabled people, none of our support needs are so low that they are at all comparable to those of low support needs non-physically disabled people. it's erasure of our disability to suggest there is no difference in support required between a low support needs autistic person and a wheelchair user on the low support needs end of the wheelchair support needs spectrum.

it is especially erasure to collapse all wheelchair users down to the lowest level of support needs a wheelchair user can have. it pretends that our higher support needs siblings don't exist.

the community does not understand us or our struggles. it won't understand us or our struggles until we are included, until people stop seeing us as the most privileged part of the community and until people stop minimizing our struggles. walkism is the reason wheelchair users have built our own communities separate from the rest of the disabled community. it is made clear time and time again that we are not welcome and we will not be understood.

A note: by wheelchair user I am specifically referring to people who use a wheelchair on a regular basis for day-to-day tasks. for the sake of this post I am not including people who only use wheelchairs at the mall/Disney/theme parks/other long distances.

[all dividers are described in alt text]

[skitter-critter123]

Hey. I'm saying this very gently in my friendliest tone. Some people (namely mentally, developmentally and intellectually disabled people) are just straight up not able to understand politics, and that's perfectly okay and not a moral issue on their part, so don't treat it like it is.

Some people may need you to explain it to them in a very simplified, easy to understand way so they can maybe get it, some people just won't be able to understand no matter how you word it and I need you to not blow up at them for it and think they're being "willingly obtuse and ignorant of the world they're living in" or whatever. Politics is a very complex and nuanced thing that nearly everybody is gonna explain differently and have wildly different opinions on what some words or stances actually mean or should mean. And some of us just simply can't deal with that and cannot be made to do so with just the right arguments and definitions.

I'm autistic (+ my schizophrenia makes my thinking very disorganized and sometimes incomprehensible which adds to that too) and I have a LOT of difficulty with understanding and learning these kinds of very complex and nuanced discussions, and a lot of the time I'm just not able to. And that's fine and doesn't make me stupid or not putting in enough effort or imply I'm "looking away" from all the problems in society. Can some of yall stop trying to make us feel guilty or even evil for not engaging in things we are not able to grasp well or at all

[skitter-critter123]

What is adaptive functioning?

directly inspired by this post by @five-thousand-loaves-of-bread

In short, adaptive functioning is a holistic view of someone's ability to adjust and change their behaviour in different environments and situations. This is a term primarily used to discuss people with developmental and intellectual disabilities and how they fare in comparison to their peers.

Someone's adaptive functioning is measured in three domains, which is why I called it holistic. All of these domains, separately and together, can affect someone's adaptive functioning.

There's the conceptual domain, the social domain, and the practical domain.

Conceptual domain: This refers to a person's cognitive skills, including their aptitude for knowledge acquisition, logical and critical thinking skills.

Social domain: This refers to a person's interpersonal skills. That includes things like the ability to understand other people's thoughts and emotions, the ability to create and maintain healthy interpersonal relationships, the ability to understand social situations and make judgements on them, and the ability to communicate in interpersonal relations.

Practical domain: This is where things like activities of daily living would come it. The practical domain measures how much a person can carry out daily tasks independently. Yes it includes things like shopping for food, maintaining hygiene, making meals. But overall you can think of it as the ability of self-management. Being able to keep track of what you need to do and when, initiate those tasks, plan for future tasks, manage your finances and time to make tasks possible, etc. There's a lot of organisation that goes into the practical domain.

Well how does it differ from basic and instrumental activities of daily living (b&iADLs)?

While ADLs are part of how me measure adaptive functioning, they can also be entirely distinct. ADLs are about being able to independently carry out regular activities.

Basic ADLs woule include self maintenance or self care tasks that are daily necessities. Things like brushing, showering, toileting, feeding oneself, dressing oneself, walking independently, transferring oneself. These are things that are directly related to one's immediate wellbeing and basic needs.

Instrumental ADLs include more long-term maintenance and self care, like going shopping and meal prepping, managing money, managing transport to places, managing medications, managing housecare and chores. Being able to do iADLs dramatically improves one's quality of life and allows them to live independently, work jobs, and such.

When measuring ADLs, we only consider whether or not someone can do them or not. This doesn't necessarily measure their overall ability or what sort of care they will need, because that depends on the reasons why they can't perform these activities. This can be a measurement of someone's support needs, but it's bot comprehensive.

For example if someone can't meal prep because they don't have the ability to grip kitchen utensils, certain adaptive equipment or pre-cut foods can facilitate them being able to do this. They still can't perform that iADL without intervention or support.

If someone can't meal prep because they don't understand that knives are dangerous and will hurt themselves, or they can't connect that chopping some carrots will eventually lead to having vegetable soup because of cognitive difficulties, or simply don't understand that meal prepping is a necessity and can't direct their attention to anything that doesn't immediately intrest them, they still can't perform that iADL. Sometimes their cognitive issues may mean that they don't have the ability to independently manage tasks that need to be doing in order to facilitate necessities such as meals. This would be because of low adaptive functioning. The support they would need for cooking might be constant supervision, or to be disallowed from cooking altogether and have other people prepare meals.

Likewise if someone has no ability to hold utensils, depending on why, they might need a different method to get food into their mouth. Someone without the ability to understand the steps of feeding, such as getting food on the spoon, opening the mouth, chewing, swallowing they struggle with the same bADL. But the intervention needed to make feeding possible would be different. A carer might have to feed them, remind them to open their mouth, close their mouth, chew and swallow for each bite.

In these situations considering only the fact that someone cannot perform an ADL doesn't really represent what support needs that they have. It's not a comprehensive measurement of support needs specifically, even if it is an indication of impairment. If we understand adaptive functioning and what it means, then we can better understand the support needs of disabled people. We will understand that someone might have low adaptive functioning but is able to do certain ADLs and someone with high adaptive functioning might not be able to perform certain ADLs. We can also understand the difficulties, barriers, and support needs of intellectual and/or developmentally disabled people.

[skitter-critter123]

Prev tags asked how this works

I expect it's attached to a style of ceiling tracks that are typically used for people who require a hoist to transfer.

What it looks like (for the style i assume is here): there are two tracks along either side of the ceiling, and then one more track attached to both of those. The person can then slide forward and backward along this one track, which can slide left and right across the other two tracks. It means as long as there's nothing in the way, a person can move anywhere within the bounds of those two side tracks.

Here is an example image of someone being hoisted, you can see the track that moves how i calld "forward and back" attached to one of the tracks that allow movement "left to right."

(image from https://www.gainsboroughbaths.com/specialist-baths-and-solutions/ceiling-track-hoists/ i know nothing about the company, it was just the first suitable image i found)

Instead of a hoist, he has this "hanging seat" to support him to stay upright.

(image is nurse in blue scrubs is standing and supporting the transfer of an elderly person in a white pajamas who has been hoisted in a sitting position. This person is being hoisted either to or from a bed in a room that appears to be in a care facility.)

[skitter-critter123]

Is it “lazy” or is it making something accessible for a disabled person?

Is it “lazy” or is it none of your business?

[skitter-critter123]

Laying in bed sick thinking about how theres a learning curve in interacting with me, even just communication. And how because I mainly interact with my caretaker, who's my mother, and then other people in my family like my sister and her husband, or maybe my therapist, I dont really experience this learning curve a lot usually. Because they all got used to it long ago.

They know that when I'm pointing to something after a question it's likely to answer it, even if the connection isnt immediately obvious. "Do you want to eat?" If I point to the clock. It means more time, it means later. They understand this. Others dont. That when I'm pointing to something without you asking a question, it's to get your attention on something that needs an action from you, or asking if it needs an action on my side (generally). No, I'm not pointing at the window to show u something going on outside like that cloud or that bird, I'm pointing at the window to ask if it's okay to leave open. Etc.

I not only point, I also gesture, a lot. Other people understand my gestures for maybe, for here, for there, but the rest? Not usually. I stand in the room and gesture the movement scissors make with my fingers. I'm asking where the scissors are. Ask if I want to eat, and I tap my wrist twice on the outside. It means later, because that's where people wear wristwatches, and it means time, it means later. They dont understand it, my mother does.

That when I communicate in one word "sentences", I cant ask questions the normal way. I cant say "how long?" "Whats wrong?" Etc Because that's two words. Now if I only do the question word (how, what, when, ...) then my question will literally not make sense. How what ? So I have to simply say "long". And you have to understand that this is me asking a question, even if my tone might not be the best. I say "long" and I'm asking, how long does this food take until it's done? I'm not randomly saying a word. It means something.

It's all very context heavy communication in ways that average communication isnt, so people arent used to it. They're not used to piecing together gestures and one word sentences and their environment and their own previous statements. They can learn how to do it, usually... but it takes time.

And it's hard to describe how incredibly frustrating it is as a disabled person with communication difficulties to go from a environment of people who mostly understand your style of communication to one where people dont, and being forced to use AAC constantly despite it being incredibly exhausting mentally and taking long as fuck, just to be understood at a baseline level.

[skitter-critter123]

Autistic people experience psychosis at a higher rate than the general population. And people with schizo spec disorders are likely to have strong autistic traits even long before they develop psychosis. On top of this, both diagnoses have a big general overlap in traits and experiences. And that's why I think we need to discuss "auschizm" just like we've started discussing auDHD

[skitter-critter123]

[skitter-critter123]

Let's Talk About The Overlap Between Autism, ADHD, and Schizophrenia

I've been wanting to make a graph like this for awhile, about the overlap between these three disorders. Tagging @auschizm because it's highly related to that blog :D

Text transcribed below the cut because it's long!

Title: Can We Talk About The Overlap Between... AUTISM, ADHD, AND SCHIZOPHRENIA?

Description: You always hear people talking about AuDHD, but schizophrenia has the same if not more overlap with these disorders, and it's not talked about!

Let's start boosting schizophrenic people's voices. There's more to the disorder than just psychosis!

Graph based on my personal experience with schizophrenia, my experiences with autistic and ADHD communities, and the words of people with AuDHD themselves.

Made by @gray-gray-gray-gray on tumblr.

Schizophrenia Only

Typical age of onset between 15 and 54 years old

Before the onset/ first psychotic break, there is a "prodrome" where you have a drop in functioning

Reoccuring episodes of psychosis (Hallucinations, delusions, paranoia, etc)

Likely had less noticeable or covert symptoms pre-onset

Often daydreaming, 'in their own world', hyper-self-reflective, 'space cadet'

Autism Only

Need for familiarty & routine

Sudden disruptions to routine are highly distressing

ADHD Only

Craves new experiences & novelty

Autism & ADHD (AuDHD)

Interest-based nervous system (meaning attention & focus is activated based on personal interest, not how important something is)

Onset in very early childhood -- before age 12

Autism & Schizophrenia (Auschizm)

Self-soothing via repetitive behavior

Higher rates of catatonic symptoms

Social withdrawal or exclusion

Difficulties filtering speech

Flat affect

Alogia

Concrete and/or literal thinking

Higher rates of personality disorders, dissociative disorders, and trauma

Internally oriented behavior

Difficulties wording what they

want to say correctly & disorganized speech

Difficulties with insight into what is part of the disorder and what is neurotypial

ADHD & Schizophrenia (SchizoDHD)

Impulsivity & hard to sit still

Difficulties regulating attention & focus, also causing social cue difficulties

Difficulty keeping a daily routine

Jumping around or out of sequence speech

Forgetfulness

Failing to reach a clear end goal or point in speech

Less coherent progression from start to finish in stories

General difficulties with thinking clearly

Drawing blanks / losing train of thought often

Difficulties finding motivation to do things

Lots of energy some days, no energy other days

Troubles multitasking

Planning poorly or not at all

All Three

Stimming

Echolalia, echopraxia

Executive dysfunction

Sensory issues & overload

Emotional dysregulation

Interconnected/webbed thought

ND communication (infodumping, connecting ideas, shared interest bonding)

Increased risk of victimization

Hyperfixations

Higher rates of depression, anxiety, OCD, BFRBS, bipolar, suicidality, sleep issues, eating disorders, and substance abuse

Eye contact differences

Difficulties switching tasks

Masking

Hyperfocusing

Restlessness

Prone to boredom

Memory issues

Social situation difficulties

Time blindness

Difficulties with school, learning, and following tasks

Chronic disorder

RSD

Anhedonia

Alexithymia

Interoceptive difficulties