Disability without a family 

I see this thing a lot that says autism doesn’t come with instructions it comes with a family that doesn’t give up. But what nobody talks about is that there are children with autism that don’t has loving supportive understanding families. There are those like me who grew up abused and or homeless. Where you don’t get food much less treatment. Where you may not go to school. And when you do all they can see is behaviors. And then eventually you get put in a residential or psychiatric hospital or both or other institutions. And they may send you back to the abuse after they discharge you or maybe you’ll be sent to a foster home or a group home and may be abused again by strangers who just want the money for having you. People who know the basics of my story are surprised I’m alive. Actually pretty much every cop and doctor type person who has ever seen me is surprised. I don’t know how me survive me just do. Just lucky maybe. Weeks without food doesn’t kill me. I’ve walked into traffic, into water and had to be rescued from drowning. When me was 16 I’m was less than 100lbs with almost no understanding of language at all. I’m was in a residential that now is closed because kids has died and been raped there. In strange ways my autism has saved me. It kept me safe in my world not really understanding everything happening. It had me focused on all the beautiful things like pretty trees and stars. My behaviors and meltdowns from overstimulation kept me safe sometimes. And because of my sensory differences me was always in quiet dark places away from people which kept me safe lots of times. There was good people at the residential. A lady who helped try to communicate with me. A guy who let me do whatever I needed as long as it didn’t hurt anyone.   After the residential I’m was homeless again. Random people came into my life. Some helped me and made sure me ate and had clothes, others hurt me and did bad things, many did both. Eventually me met my old caregiver. Was he perfect? No. But he did more good than bad. He work with me for years on communication and self care. He learned of my seizures and had me see doctors and stuff. He got me important things like ssi and food stamps and eventually housing. 

 And then he was gone. And there was no one. It’s been a little over 2 years that me hasn’t had a full time caregiver. And that me has been type this blog thingy. And in that 2 years Me has learned how much Me needed him. And with the MS I’ve needed him more than ever. We didn’t know when he left that me had it, but me did. Not even the doctors had put my symptoms together even as he was teaching me how to say something hurt. Everything got blamed on autism. Even my cerebral palsy. Well now me know it was wrong. But here me am alone. My interest keeps me happy most the time. Mostly me am like a little kid with my Disney movies and toys. I stim the best me can, me has meltdowns and shutdowns here alone. But me do things. Sometimes me eats or takes bath. The other day me spend 3 hours getting dressed by myself and went to build a bear. But it’s hard both the mental and physical parts from understanding me needs to eat to thinking all the steps to getting my body listening to holding stuff (me do has tools to help hold stuff). Even open the fridge is more hard than thinks. 

   Most people you see that has such physical disability has family and friends that help. They live with people. The same for people with neurological differences like mine. But not me. Here me am in this apartment doing things and not doing things. Nobody to help me but nobody to judge me or hurt me or make things worse by trigger my ptsd or messing up my sensory needs. Some days when me thinks on it me am proud of me for surviving and doing things. Other days Me has all the feelings and wonders why I don’t have a family to help me. Most days I’m to much autistic to think of anything that isn’t related to my interest or routines or sensory things; or to anxiety thinks of what to do and how to do it. My autism is a neurological difference, a important part of me am. It’s what makes me Me, happy and creative and determined and always seeing the best. Even my cp is more of a difference because I’ve always had it. My MS is a disability it takes things away from me and makes me not able do things me love. 

Anyway the point is not everyone who has autism or other disabilities no matter how severe is lucky and has a loving understanding supporting family. Some of us are or was homeless and or abused and are just surviving. And that we are surviving because of our differences and disabilities just as much as in spite of them. Being different doesn’t mean you get a good family. Honestly because of how hard it can be taking care of us with the most and most severe disabilities we’re prolly more likely to be hurt by those who should love and care for us, like all these sad stories of kids killed by they parents. My mamá try to kill me and me am glad it not worked. Mine life isn’t easy but there is love and happiness not just pain and nobody should take that away from me or anyone else no matter how different we are. Even when we can’t talk and may always be stimming and running and other stuff and even when we can’t barely move our own bodies. 


Being me

I know who me am. And I know that for now nobody can accept all of me. I’m to complex, a contradiction. I have a Facebook and a YouTube and this. I don’t think anyone who follows all 3 would understand it’s all of the same person. Here you see mine thinks in words. Facebook you see mostly things I like in pictures, mostly shared photos from Disney and other things me likes it shows a person who may be lower iq but can read and has friends. YouTube you see my body, the wheelchair, the stimming, a person who shows how they’re trying to learn to read, a person who looks like they can’t do anything without help. It’s all me. I take weeks, months, to write these posts. In my everyday life I practice reading and typing because I have multiple disabilities that make hard including aphasia and memory problems and yes a low iq. Most my interactions happen on a child’s level, and honestly I’m ok with that because functionally that’s where me am. What I’m not ok with tho is when people do 1 of 3 things (and pretty much everyone does)- they either 1) assume that because of my language/iq/processing differences and my interest that I don’t have any thinks 2) they assume that because they saw my typing or because I’m alone (when im not vocally stimming) im a very high functioning person 3) they completely ignore me as a human and instead look for or only speak someone is with me, normally about me. These are all wrong. I do think about things, it takes me much longer to process and find words and I may need help understanding but I have thinks of politics and of science and philosophy type things. If you can email me, be patient, and use simpler words I can surprise you. But even tho typing I can show thinks in the everyday world I can’t understand spoken words well. Every part of a conversation is hard for me- understanding your voice, finding meaning to those words, remembering all them, finding a response, finding words to use for the response, finding a way to express those words. The mall is close to me, sometimes i take my chair there and visit the same stores where they know me. I take hours trying to get something, the staff help me make choices, do math, pay for things, even help me put away everything. They read what I type and are patient. They don’t mind if I stim or sit in 1 place for a long time. You want to something awesome? My good arm is hurt so I’m using the other that has half the muscle and i can barely control (not the awesome part); i still spent 3 hours using that arm to get dressed and ready all by myself. I put on a song on repeat and stimmed as much as needed and did everything my way without judgement and got it done. When me can forget what everyone wants from me I’m can be happy. It’s ok that I love my stuffies and toys and Disney. And it’s ok that I watch the matrix and that me worry of what will happen to mine ssi me needs to live because the new president is scary. Me not needs fit in a box. Me has seen stuff by others that is nonverbal but is super smart and the same level as other people them age. But that’s not me. And it’s ok. It’s ok that me needs help. It’s not ok that because me needs help people don’t see me as a person. I’m so much more than my differences/disabilities even tho they are part of me that we all needs accept. Rafiki said look beyond what you see. You can see my body that doesn’t work good, and you can see my mind/brain is different, but what you can’t see is the most important- my soul if fine. I love and feel and think just like everyone else. I just can’t express it good. Here’s some things about me. I’m nonverbal, a quadriplegic, has trouble reading 1st grade level books. But more important I’m independent, creative, understanding, and love to make people smile. I’m a survivor of abuse and bad health and homelessness but I’m always positive and focus on the more good things. Well except maybe this blog where me try help people understand what they can’t see, and use it to prove that me has thinks and feels. Me guess mine point is that people need to stop assuming and judging and trying to make everyone in a box or as a cookie cutter person. We is all different and that’s a good thing. Years and being judged has me scared to be myself even alone in mine own bedroom. It makes me has anxiety to stim or play with my toys or watch what me wants on tv. It makes me think me am not good enough. That me needs to either be like other people mine age and understand stuff, or that me needs to be completely helpless and not have any thinks. I’m working on being me. And me should be respected. People need accept and respect that even tho me am different, and needs help that me am still a person who should has choices of mine life and listened to, and that me can be a friend. Oh that’s a thing to, yes me wants a friend. Yes me am different and not socializing like others but I’m still like has people that likes same things as me and has fun together. But the problem is most people that like me and sometimes visit or text me only see me as this like little kid or very disabled person and don’t really try to get to know me. Well and 1 or 2 who think me should be age appropriate at understanding things and have normal interest. I’m would like someone my ageish who will has fun playing with me. Me has see a few adults that live with family and has lots needs like me and likes same things, but they parents don’t give a chance to has friends, maybe they think the person can’t because can’t read and/or because me on Facebook me am to high functioning to be they friend. Me would even like if a person doesn’t care to play with me if they accept me, stim and interest, if they would has the patience to communicate with me as a friend, ask me what me likes, talk of life like me understand more than just ine abcs, ask me how me feels of losing so much to ms.