You know what’s really hard? Finding friends like me. Well ok making friend at all. But even for a nonverbal autistic adult who is mostly housebound I’m having extra trouble. Do you know why? Because I’m not smart enough. There are things on Facebook and the internet for adults with disabilities to make friends. Lots of nonverbal adults and or housebound adults use them. But I’m not a very smart nonverbal person. My iq is a little higher than you expect by looking at me but not super much. I have help reading and typing but even with that there’s the problem that I just don’t understand stuff. I’m not a very good adult friend. Some people kinda just deal with me like a baby brother or just ignore me. Both is sad. I’m smart enough to know I’m different. Most people like me don’t have Facebook. They have family and or support living. I think we need a space to make friends like us. I like to share paw patrol pictures and stuff on my Facebook. I has learn that Facebook can be very mean so I don’t add people I don’t know anymore. But me wish was something for us. Sometimes I’m not sure if I’m to disabled or not disabled enough. I guess both. To disabled to make friends like me and not disabled enough to not know. And it’s more bad in my head because sometimes I feel like a fake, like maybe I’m not trying enough. Part of it is the problems from ms – things like pain and heat flash and tired body and brain that you can’t see so it’s like why can sometimes I sit up and feed myself and others I need trunk and head support and someone to feed me. Part of is that with support and time I can do things like use Facebook or make this blog and it seems like the world thinks if I’m I can type at all me should be very smart and always able to understand what people say and if me has any understanding I’m should never has meltdowns or shutdown. Like I’m supposed to be really high functioning. But that if I’m dependent on others then I should have the brain of a baby. It’s all you see. People like who have severe differences that leave them nonverbal (autism, cp, ms, als, etc. . .) either is shown being average or above average smart when they get a device or they’re shown as completely helpless and not understanding anything. I will say great support means everything. I have 2 main caregivers. For now it’s still not all the time but is working with the state on something better. But both is mine friends. But it’s funny because 1 likes to do everything for me and let me know it’s ok to want help, and the other likes to do as much I can but will still help when me needs it. So like I’m being told to be more independent and less independent at the same time. Kinda confusing for me because I can’t find that point of where I’m pushing myself to hard, maybe because it changes everyday. Almost everything can cause pain and tired from brushing mine teeth to changing myself, even trying to sit up with no head and chest support. So I can be independent and hurt and be sleepy or I can let someone do things for me so I can be awake and enjoy them. Anyway the great thing about both of them is they completely accept me. They are ok that I’m very childish and need help but they still talk to me like a person. Maybe not exactly how they do other people our age because they respect what I can and can’t understand or deal with. But they don’t make me feel less. Even when I can’t move at all and am like a rag doll they joke and talk to me as tho I’m was able to reply . One even says my reply for me lol. The best thing tho was a day I’m was having a panic attack. I can’t understand words when I’m like that. I sent a picture text of my 5 point scale to show how me was. And when I didn’t respond to word texts he started finding ways to text with pictures to help me calm down. He was super patient and eventually I calmed down. It meant everything to me because nobody has ever do that before. Communication on my level was awesome. And honestly me wish more of the time people would text with in pictures since reading is so hard for me. Which again goes back to why having friends on my level would be nice. The other thing people don’t think of is communication with me on the go. I have a power wheelchair and a communication device (luckily am getting new better ones this year). The problem is even at mine most able times it’s impossible for me to drive the chair and type. So when we walking I can focus on where we are going or I can stop driving to process what the person say and find and type a response. The other option is to be pushed in a transport chair. Basically at mine absolute best I have to choose between independence or having a voice. I like being able to go where me wants to show things me sees but then I miss out on jokes and things. As I’m more and more housebound tho it’s not a problem but when I’m doing better and want to enjoy fresh air and have fun for a little bit it’s sad. I thinks it’s even more hard on me tho because I’m just getting more good at communication so it’s like now I’m learning how to say things and want to share but I’m not able to. It’s like in order to enjoy the friends me do has I has to give up most mine independence so that I can communicate and not be overwhelmed by pain and tired. But it’s hard because I’m already to dependent to make any new friends. And words the thing that is supposed to free me is something that has always been to hard for me. Even now that I’m learning ways to use them my brain gets to tired to understand or use them both trying to listen to people and trying to text. I want something like Tippy talk and bitmoji and Facebook combined. A way for us that have trouble with words to communicate with each other. But like with groups because some of us are still childish and will want to share cartoons and coloring but others are more smart and will want to talk of dating or politics. Idk I’m just sometimes feel like I’m the only person like me. I guess my past is to blame because of the abuse and homelessness. I didn’t have family keeping me safe from the world. I didn’t learn independent or communication skills I learned how to hide. And when I got help in my 20s it wasn’t by professional it was by a person my age. So me was teach different things and was teach them differently. And me got MS which stopped me from doing the things me was learning. I had learn a lot even if needed help but then it got take away. And for the last few years all me has to work is words. And even tho it’s the most hard thing ever me has done good. It’s a way to say me has needs and wants and feels and thinks. Me still uses lots supports but me can type this and me has Facebook. But it means that me has learn that me am alone. Learning is supposed to be good but not learning that there is a whole big world and you don’t belong anywhere not even with other people that has same things as you. In other news they should make a towel for wheelchairs. Like that attaches to it and covers it but is wide enough to fold over and cover you to with a head piece.
So I’ve been in the hospital for a few days and am finally out. Apparently I’ve had an infection for 2 months but by time i understand it spread to mi kidneys. I was hurting which is new cuz i barely feel things they gave me morphine and narcos and antibiotics and stuff in an iv. They didn’t want me go alone so mi friend came for me and even bought groceries which was nice. They tried refer me get a worker from cau (community alternatives unlimited) but unfortunately cau denied me earlier this year. They don’t think it’s good that most (say 85%) time I’m alone. I have no assistance with things like keeping food and remember eat and take meds. I do mi best. The thing is I’ve always been me so i don’t really notice. Yes i know i have meltdowns but i rarely know why. I just try survive. And since i always say I’m ok then people assume I’m ok which makes sense unless you remember mi differences. If you want know things you have ask specific cuestiones such as did you eat or can you handle going to the store. And also i don’t always remember things or get them twisted in mi head. I’m just a space cadet missing a pilot – i am watching the
stars and hoping the bumpy ride don’t kill me yet cuz there is more beauty to see.