#adls

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

Higher support needs disabled people needing help with things like eating, going to the bathroom, and showering isn’t gross or babyish.

It isn’t gross to have help showering, or using the bathroom, or any other bADL. Disabled people deserve not to be called gross for needing help with hygiene and things. Disabled people deserve to be seen as people if they need help with these things.

I’m a disabled person who needs help with showering, grooming, and sometimes eating (yes, physically getting the food from the fork to my mouth) and that doesn’t make me gross. That doesn’t make me babyish. That makes me a higher support needs adult. That makes me someone who needs help. Stop saying that these things are gross to need help with, or telling people that “you’re grown, you should be able to do this”. That isn’t helping anyone.

Experiments on Cats, oil on canvas, 2016

it is not embarrassing to have gi problems.

it is not embarrassing to need help with personal care or bathing.

it is not embarrassing to have groin/breast pain.

it is not embarrassing to need help using the bathroom.

In this post, I use "caregiver" and "support provider" to mean someone who majorly supports you with life functions (like bADLs and ADLs). This might be a healthcare provider, family member, 1:1 support staff, friend, or someone else. They may or may not be paid to do this job.

They might help do things like feed you, help you with toileting, drive you, moving you from place to place, help with finances, keep your house clean, scheduling appointments, or provide 24/7 support.

This post is not asking about if you are an underage person who is under the care of your parents because you are a child.

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.

[ note: I’m not a professional nor claim to be. I’m just your local transmasc trying to let some other folks know about things that have helped me ]

Ambulating — not much to say about this one, honestly mobility aids help with this one a lot from what I’ve heard ( can’t get them yet but I will eventually )

Dressing — find a fabric and your comfy with if it’s a sensory issues thing, sit down if you need to and if you do try to only stand when necessary, try getting adaptive clothing ( clothing that is made to be easier to wear for disabled folks who have trouble dressing ), and lastly; don’t be ashamed of needing assistance

Personal hygiene — do it when you can like when you’re having a better day and use alternative methods:

For tooth brushing; mouth wash, floss, use a damp cloth or wash cloth to get rid of food and plaque, use an extra soft toothbrush ( this will be labeled on the package usually ), use unflavored toothpaste or brush without toothpaste, sit down while you’re brushing if you need to. ( fun fact: you don’t need to do this one in the bathroom )

For showering; baths are the obvious ones, wet wipes, dry shampoo for hair, damp cloth or wash cloth even to just get the essential areas with, unscented deodorant, swapping out scented products for unscented products in general for sensory issues, shower chairs if you struggle standing up for that long, just wash your hair if you can, and there are a ton more alternatives and adaptation for mobility issues or sensory issues ( Here’s 10 for mobility issues from this article I found https://equip2adapt.com/blog/bathing-alternatives/ )

[ Remember that a lot of these alternatives can’t entirely replace any of these or are as good, they just keep you clean in between or keep you as clean as you can be ]

Continence ( in this case I’m talking mostly about incontinence ) — pads, liners, period underwear, diapers if you need them. If you have trouble telling when you need to go then I’d recommend scheduling bathroom breaks however often they fit into your schedule. ( I don’t have many tips for this one, sorry )

Shopping — headphones, fidgets, stims, sunglasses ( if you wear regular glasses then there are special frames that can have an attachment that is just sunglasses so you can have your regular glasses then on top is sunglasses ). If you can’t stand for too long or have pots or anemia — especially if the anemia is chronic — then a wheelchair or a rollator might help ( some can convert to wheelchairs but they aren’t self-propelled ). I know target has an app that gives you directions in stores ( If other stores have this then please tell me ) which might help if you can’t ask a staff member or don’t have the spoons to wander around looking. Make a list in advance so you know what you’re getting and can pick a place that has all of it so you don’t need to be going to multiple stores or getting there and realising they don’t have it . Plan the route you’re using to get there.

You can also don’t need to go in stores, order in groceries/get them for delivery if you can