#iadls

[ID: Two lorikeet birds bouncing around a water bowl being filled. /END ID]

April 11th: What are some things that might come easy to neurotypical people, but which you either can't do or need help to do?

On good days , Pixie need help/prompting with Most basic Activities of daily living ( bADLs ) .

basic ADLs like eating , showering , and using toilet , Pixie need help with remembering to do ( prompting ) . need help get started like getting shower on and removing clothes , get First bite of food in mouth , things like that .

On good days , Pixie can never do , and need someone else do for Pixie , most Instrumental activities of daily living (iADLs) . like preparing meals, managing money, shopping, doing housework , using telephone , Taking Medicines , transportation ( Pixie uses disabled Access bus and but still need help with it ) , paying bills , Seeing / communicating with doctors , managing chronic illnesses like asthma and migraines , things like that . All these make Pixie dependent on guardians to do for Pixie . and . is Why Judge in court say Pixie “ incompetent “ and need legal guardianship to protect Pixie .

On bad days Pixie need even more help especially with basic ADLs . like . needing help with getting food from bowl to mouth . physically washing body in shower . physically being moved to where need go , like walking to bathroom or to Pixies room , things like that .

Pixie will never be is be able live alone . and . will always need lots help from guardians and caregivers .

PT: Support Needs Pride Flags /end PT

These are all disabilities inclusive, since the my former ones are exclusive to autism (link). These flags are inclusive of all disabilities.

Disclaimer: support needs aren't monoliths, they don't have clear ends and starts, the definitions presented here are just attempts at defining what they are.

More information and ressources about support needs on @birdofmay on this post (link).

Here is the Wikipedia page (link) about basic activities of daily living (BADLs) and instrumental activities of daily living (IADLS).

High Support Needs

PT: High Support Needs /end PT

High Support Needs: inability to live independently, requiring global support with BADLs and IADLs. This can include frequently or consistently requiring support with: self-feeding, cooking, bathing, functional mobility, transportation, basic grooming, putting on makeup, continence, toileting, getting dressed, completing tasks, housekeeping, managing medication and money, transportation, etc.

Can be abbreviated online or in writing as HSN(D) for High Support Needs (Disability) or HS(D)P for High Support (Disabled) Person.

Moderate Support Needs

PT: Moderate Support Needs /end PT

Moderate Support Needs: ability varying to live independently from person to person, requiring support with IADLs and some BADLs. This can include frequently or consistently requiring support with: cooking, preparing meals, self-feeding, completing tasks, transportation and mobility, toileting, washing one self, getting dressed, housekeeping, managing medication or money, using communication devices, grocery shopping, pet care, etc.

Can be abbreviated online or in writing as MSN(D) for Moderate Support Needs (Disability) or MS(D)P for Moderate Support (Disabled) Person.

Low Support Needs

PT: Low Support Needs /end PT

Low support needs: ability more often than not to live independently, requiring support uniquely with IADLs. This can include frequently or consistently requiring support with: balancing a checkbook, cooking and preparing meals, pet care, housekeeping, managing medication or money, shopping, transportation, getting started on some tasks like organizing a garage sale or arranging to move from one house to another, etc.

Can be abbreviated online or in writing as LSN(D) for Low Support Needs (Disability) or LS(D)P for Low Support (Disabled) Person.

Flux Support Needs

PT: Flux Support Needs /end PT

Flux Support Needs: ability fluctuating to live independently, requiring support at fluctuating intensity with BADLs and/or IADLs, so much that it cannot be considered low, moderate, high or in between those. Fluctuations can be random, have causes, vary in length and frequency.

Can be abbreviated online or in writing as FSN(D) for Flux Support Needs (Disability) or FS(D)P for Flux Support (Disabled) Person.

Moderate to High Support Needs

PT: Moderate to High Support Needs /end PT

Moderate to High Support Needs: inability to live independently, requiring support bordering between moderate and high. This includes but isn't limited to: being on the high end of MSN, being on the low end of HSN, requiring support with most of BADLs but not globally, requiring support globally with BADLs but moderately, etc.

Can be abbreviated online or in writing as MHSN(D) for Moderate to High Support Needs (Disability) or MHS(D)P for Moderate to High Support (Disabled) Person.

Low to Moderate Support Needs

[pt: Low to Moderate Support Needs /end pt]

Low to Moderate Support Needs: significant difficulty to live independently, requiring support bordering between low and moderate. This includes but isn't limited to: being on the high end of LSN, being on the low end of MSN, requiring severe support with IADLs and a few or mild support with BADLs, etc.

In the beginning of March autism basically was my whole identity, and my everyday life was immensely impacted by my autism. Since the beginning of March and especially since the beginning of April, I changed a lot, and it feels good. I want to tell you about my change.

I lived the life of an L-MSN to M-MSN autistic person because I thought I would need this help now. My ADL and IADL skills are L-MSN to M-LSN. I gained a lot of independence, and in the beginning, I was extremely scared that doing things independent would be extreme suffering for me, but it the opposite is the case. This independence brings me joy. Doing ADLs and IADLs is also a good distraction, which prevents my brain from thinking negative thoughts.

How my IADL and ADL skills improved

I had a bit help with dressing at least on time a day in March. Now I dress myself independently every time. I had someone with me and a bit help with showering every time I showered in March . Now, I shower completely independently every time I shower. I had someone with me and a bit help with toothbrushing every time I brushed my tooth in March, and I only brushed my teeth once a day and only flossed a bit. Now, I brush my tooth independently 2 times every day and floss all teeth. Food preparation except for some very little things was completed for me in March. Now make my breakfast and dinner independently and try out cooking easy things / help with cooking because I want to learn it. Shopping was nearly ever completed for me without me. Now I shop on my own. I shop the bigger part on Saturday there a caretaker drives with me to the grocery store but I search and pay my stuff on my own and when something is out of storage I can go to the grocery store on my own and buy it. I can even ask a salesman in the grocery store or a salesman at the pharmacy for a specific thing I need. Nearly the whole housekeeping was completed for me. Now I clean multiples a week in my room or changing tasks like vacuuming, cleaning the toilet thing , washing up the floor and other stuff. My laundry was completed by a caretaker, and I helped minimally. Now, I do my laundry completely on my own. I don't left the plot of the care home on my own. No I can go to the supermarket on my own and O even go for walks in the woods.

My mental health and mindset also changed.

How My mental health and Mindset changed

I had death wish thoughs every day multiple times a day. Now I have no or only 1-2 deathwishthoughs each day.I had very often negative thoughts. Now I have them much more seldom. I had psychosomatic pain for multiple hours a day. Now I have some days without psychosomatic pain and when I have it I only have it for short time.I didn’t wanted any change , hated independence and saw it as my point of life was it to be severely disabled and in need of care because of restrictive thinking. Now I want change , I like independence and my goal is it to life semi independent in 1-2 years and my environment sees this as a realistic goal. I saw it as unfair and hated it that how my life and how good it will be depends on my own behaviour although I was never asked if I want to be born before birth. Now it feels good that my life is in my own hands and I want to make a good life out of it. I had meltdowns around 3 times a week. Now I had 1 meltdown a week in the last weeks, and it’s mostly really short.

A way of thinking I had this week which made me proud of myself because I thought very different in the End of March is that @aa-aaronsautism (I mention you because I think it will maybe help you to gain followers) told me that the out patient care service comes to him today and he is nervous. On the next day I asked him how it was. He told me it was okay, but the support worker was rushing because of the staff shortage in the care system. My thoughts in this moment were that I want to become able to live outside of the care system to make place for people who need it more urgent than I.

(I now one person cant change the staff shortage in the care system but I think people who read this will understand the principle of my thoughts.) That way of thinking made me really proud of myself because in March I was still really scared of getting my official care needs categorisation set down in summer (which will definitely happen but now it’s good for me.) and it made me happy when the boss of my former care home told my mom that he thinks my official care needs will much more likely get set higher because of the care I thought I would need at this point. I thought this way because my thoughts were so fixated on being disabled and in need of care due to restricted thinking.

Some thoughts I have because of my development

Due to my good development and my significant decrease of careneeds I worry more about my base limitations. I mean limitations that can not change which is basically my eye nystagmus and in some kind also the fact that I’m a transboy. I’m mildly visual impaired due to a condition called eye nystagmus. The condition let’s my eyes wiggle 24/7 uncontrollably. I have 30% vision because of it. I’m not allowed to make a drivers license because of my sight. This let’s me worry in some way but I try to think it will be okay. I can use public transportation, or at least I know I can learn it and will learn it at some point, and I’m allowed to drive a bike and also an e-bike. I’m worrying about being trans because I’m scared that I won’t get accepted by strangers as a man. I currently can’t access gender affirming care due to my mom, who is my legal guardian. I also don’t have much dysphoria, but I worry more and have a bit more dysphoria in the last time because bigger problems are out of my life, but I hope it will be good later in life. I try to think it's not important what strangers think I definitely will have friends who accept me. Using public toilets is the point which lets me worry the most.

I want to add a thing to the title of the post. I know autism can’t go away, but I mean, it feels like I wouldn’t have autism in comparison. I mean the comparison to living like L-MSN to M-MSN people and now having L-LSN to M-LSN but I also now my life is still far away from normal because I live at a group home and I don’t work a normal job. I’m at a day centre and only 4 days a week for 4 hours a day.

Food preparation:

I can use the microwave and toaster independently with some visuals. I can get snacks from the fridge or cupboard with some visual prompts. I can prepare simple meals like sandwiches, toast, cereal, and oatmeal with visuals or step by step instructions on the packet/box. It’s not safe for me to, and I don’t currently use heat sources like stoves, ovens, or toaster ovens. Even if I did use these I would need hand over hand help and supervision because of my tendency to get burnt.

Household chores:

I can unload the dishwasher myself with a visual+verbal prompt, and load the dishwasher with external support. I can organize blankets and pillows onto the sofa and chairs with external support. I can fold the towels and put them away with multiple verbal prompts and a routine of how to fold them and put them into piles. I can wipe down tables and dust with help from someone else too. Currently, things like laundry, washing dishes, vacuuming, and deep cleaning someone else has to manage. I might learn some of these in life skills class but will still need help and intense support by another person to do them.

Money management:

I have birthday+holiday money saved up, and occasionally help pay for gas when my family’s low on money. I prefer cash as it’s physical so I know exactly how much I have. I don’t have a bank account and according to my future living situation in assisted living, all living costs and utilities will be managed by my family.

Shopping for necessities:

I have trouble in stores, navigating aisles, and get lost extremely often even with my family next to me. I have a hard time making choices and budgeting, so all this will be handled by someone else most likely. Unless I learn it in life skills class and can do it with intense external support.

Transportation:

This one I have tried but have failed; as I tried a golf kart and almost ran into a deep ditch. My processing speed is so slow that I wouldn’t be able to manage even an empty road. Due to general cognitive issues, it just wouldn’t be safe for me to drive. I would have to have someone else take me places whether that be my partner or family.

Using the phone:

I can call on the phone with people I know. But for things like doctor appointments, and literally anything else. I cannot do.

Managing medications:

i want to go back to college in the fall but im worried that i'll struggle with those things again and my life will fall apart like it did last time (getting yelled at for not doing chores, breaking down over laundry, failing classes, meltdowns, etc).

i brought up living in a group home and said that although it would provide the support i need, i was worried that they only accepted MSN autistics. theyre also really expensive and idk if theres one thats a close distance from my university. it would be a good solution if i continue to lose skills (which i think i am, im having a harder time masking and keep losing speech even when calm)

my dad suggested living in the same city as he and my family and transferring schools but i want to go back to my lab at my current school and they have a much better biology program up in DFW than they do here. i could definitely benefit from the added support of my family though.