When my body can’t stim

I know me write that funny. But it’s for reason. I’m not talking of being told not to stim. Or making yourself not. I’m talking of when my body is so weak it can’t. Stimming is a big part of how me interact with the world. It’s a way of communication. And more important it’s a way to keep me from overwhelming and shutdowns and meltdowns. I don’t stim on purpose most the time. If me thinks on it or gets me reminded I’m may work with a stim like moving my finger for a chew tube. But it’s mostly natural and automatic. Over the last few months mine ms (multiple sclerosis) has be get more bad so my body gets tired and more weak and hurt more easy. The 1st stim to get hard was rocking. I have always rock lots. Not being able to rock alone or in a chair is really hard. It helped me focus and without it I’m has more hard time understanding spoken words and process what me see. It also was my best way to calm down feelings. Without it my feelings get so big and scary. I’m do vocal stim lots more now that me can’t rock but it’s not as good. Me bites more and headbang more. I don’t mean to but my body has to. Sensory stuff is harder. Besides rocking now me can’t always hand flap or even cover my ears. And chewing is way harder. Me used chew all the time but now after less than hour my head can’t no more. At my worst I’m a rag doll. And all these things hurt my brain and ears and eyes and skin and feelings and me can’t do anything. My body just kinda lays there. Maybe I can barely move my head or a finger or make a small noise. But mostly not. I’m get stuck with all this pain and there’s no escape and nobody knows or understand. Night and morning is the worst. I’m still can’t sleep. But for hours and hours I’m just laying there awake. Sirens come and go. People talk and construction starts. Clothes hurt my skin. Lights hurt my eyes and head. Electricity is so loud. There’s all this sensory pain and of course the body pain. Without being able to stim I’m tortured and trapped. Autism is not trapped me. But this ms traps me in a world that tortures me. I’m need stim more than breathe. I cry more now and my feelings get big. I’m not able to communicate with people as much as me was. I can barely leave my room. I’m has to take Allie to potty but it’s not the long walks we liked. Everything is to much. I hide in my safer places. Taking more baths again. Even when I can’t get out the tub by myself. I’ll stay in there for hours under the water to be ok. And I think of how crazy it is some people put themselves in this torture of not being able to stim. And me thinks how sad it is that some people force others into this. You know this constant torture on the body and brain and sensory can cause ptsd. It’s not the same as the abuse you think of but it’s still traumatized. Trust me I have ptsd from abuse. And this constant fight on my body and mind is just as hard. So me wanted to explain this to maybe helps people understand. If you has autism stim is ok because it helps you. And if you know a person who stim let them, it’s a way to cope with the world and understand it and communicate. 

Words being stuck 

I’m want to say a thing. Me types and you see that. But you don’t see all the words that I never find or can’t get out. Lots of mine feels and thinks stay in mine head. I don’t know if that is true for all nonverbal autism people that learn to type and or talk or not but it’s true for some of us. And you don’t know who. So don’t judge and assume anyone language skills just because they type or talk a little bit. Some may be really good at say what they thinks but not what they feel. Some may be good at both but not good at understanding what other people say. Some may be great at understanding what other people say but can’t say what they want. Some may be like me and still trying to work on all those things with extra supports and time. Language skills and communication skills are very hard to understand and you should take time with the person and try lots different communication ways with and without words to see where a person is. But that’s still can’t show you what is on the inside. Like how a paralyzed person knows how to walk but can’t make they legs work some people know what they want to say but can’t get it out because the brain scrambles everything. 

Changing yourself when paralyzed 

I’m talking of changing your diaper for incontience not clothes. I can’t be only person who has to do this. But we not see anywhere that talks of this. So for everyone that may needs to here is how me does. What we learned is a in the middle of how you change your pants and how a caregiver is supposed to change your diaper. To take off pull your legs up and bend at knee then put by your side. Open the sides and clean yourself. Move one knee to the other and roll to your side (it may help to push from a wall). Clean your backside and move the diaper. To put on me open the clean one 1st and puts on the side me will roll to. After you removed the old diaper put the new one as close to under you as you can. Roll on your back again. If needed roll to your other side or lift your thigh to move it to the center. Put your knees bend again and tape up. I’m hope it helps, it can be hard especially if your paralyzed or weak in the upper body to. But me thinks is better to do myself than has someone else unless absolutely needed. 

Ups and downs skills 

I’m losing some skills. Some of them it took me a long time to get. Like brushing my teeth and dressing myself. Some of them me was still working on like buttons and writing with a pen. Some of them me was good at like push ups and rocking. Once upon a time I could see better and do math better but that’s hard to remember. Those 2 things got bad years ago but me thinks they are even more bad now. Mine eyes get blurry more and it’s getting harder to add with my fingers. But I’m get some skills better. This year me learn the feeling words scared and pain. I’m not the best at understanding them but I know better than before. And with my Dynavox and practice with my friend me am get more good at typing mine thinks. I’m still not looking at people but me use my Dynavox to say thanks you and have a good day and that’s a big social skill and communication skills. I’m thinks there are 2 scary things to me now 1) me stop being able to do anything for myself and needs a full time caregiver and gets abused 2) mine eyes stop being able to see words so then me can’t understand stuff again because I’m not good at understanding spoken words and most people can’t draw symbols or use pictures to communicate and me can’t barely use ASL now so then me can’t communicate again. But the good is mine iPad has switch controls and they is working on getting me a new Dynavox AAC control by my eyes or at least my head so even if me can’t understand other people or do anything else me can say what me needs. 

Moving and stuff 

I know me hasn’t been on for awhile but I’m been typing here and there to make this post. October was super busy. The good part is it got me a new apartment. It’s a building with mostly all older people but it’s also for disabled. It’s still being renovated, mine apartment was the 1st accessible apartment done. But I’m miss stay with my friend. I’m happy to has my place and can use my power wheelchair but it’s lonely and lots of new scary stuff. I’ve never moved alone before. Allie has been patient with me. We learned that Me has MS to add to my fruit salad. I’ve had it since 2013 but because my other differences it was hard diagnosis. It kinda just makes my autism and CP more obvious, but the 1 thing easy to know was that was when me started needing to use a calculator for more simple math. And the other is my eyes getting worse. My vision is the same but my eye muscles get tired more fast. All mine muscle do, there’s been a few times now where me am awake but my body is like rag doll. We’re working on getting me a personal assistant for a little bit during the week. My friend lives not to far and will help if me ask but I don’t want to ask. It’s different when me live there and was easy to has him help without thinking of it, like making food he needs eat to so not big to has him cook for both. Me am scared him see that me needs help more than he knows, the last person to see that mess up our friendship so bad. But Allie likes it here, there’s lots sidewalk so she gets better walks again. There are lots of times me has get my wheelchair stuck or run into stuff. I’m been working on accepting myself again. Today me decided to donate most all my books that me can’t read. I’m been practicing on read theory for a few months and I’m still not always even 2nd grade level. I need to be ok with this because it’s for fun only. I don’t have to be a super good reader no one is going to lock me up. I have the tools like Dynavox to help me read when someone texts me and I can ask them. But books is just for me. And the same with my body it’s ok me can’t walk anymore and that even my arms are worse. My soul and inside mind is still good. It just takes a long time and lots supports to show. Yesterday me did maybe a stupid thing. A guy in this building gave me food and told me it was yummy lunch. So me eat it and not think of it. But then me had a seizure and pass out and wake up vomit. I’m was allergic to it. My friend wants to get my ID address update but me am scared of the office. And if it will mess up special disabled state ID that is good for 10years. On happy stuff my friend that me likes is still accepting and liking me. We did a Halloween party thing and even win costume contest. He pushed me in the transport wheelchair and not even care that at the end he had to carry me because my body gave up. It was super fun. I’m just been physical and mentally exhausted most this month and especially the last over a week. But I’m keep trying remember I’m not stupid or bad because me needs help. My friend is good for making me feel I’m ok as me am. And me am look on Amazon for lots of stuff to help with mine differences both physical and mental. But me am scared to need more help than me do now. My friend is going to be my POA and me trust him, but I’m still scared to need more help or even let him or others see how much me needs because I don’t want anyone to think Me can’t do anything or that me am not trying mine bestest or that me am not valid even more than they do. Oh ya me made a new friend at the Halloween party. I’m being slow let her see my mental differences. She was so sweet holding my head and giving me a straw for water and telling my friend she knew I was just like them even tho my body is different. But I’m not just like them. I did text her me has autism and some problems with words, so far she’s super nice. She’s on my fb now so that may be a easy way for her to see just how different me am. Oh and build a bear got white tigers and me had to has one. Me worked hard on the name. Tomorrow me an go see Trolls.