Burden or friend?

I’m has a big talk for you to think of today. First me will tell you of myself, and then give a few important people in my life nicknames because im prolly should has long ago but just took the idea from mine friend thesarcasticautist.
For those that not knows me hi I’m Tiggy (aka Juan). Tiggy is mine nickname because I love white tigers super much and always has. Wolves is my 2nd favorite and then all other animals except mosquitoes. I’m loves Disney most especially Aladdin and the lion king and Sophia the first/Elena of avalor. I’m also loves paw patrol, MLP, RUGRATS and all mine growing up shows (blues clues, ed edd eddy, arthor, little bear, etc. . .). I’m a super big fan of PBS especially wild kratts and word world and odd squad- me has almost all them apps. I loves build a bear and the zoo. My favorite thing is to make people smile and laugh. But also me has multiple differences and disabilities. Some me was born with like severe autism and cerebral palsy. Some life gave like ptsd and multiple sclerosis. Some things are on the inside on my tummy and heart and stuff. Some is in mine head like seizures and ocd. And some is on my body. And then there’s stuff like my low iq and allergies that affect all the other things. I’m has been nonverbal all my life with incontinence. Growing up me was the kid that would play in poo and run into traffic and self injury. Most these can be blamed on sensory and communication challenges. I’m still struggling with some of these things and others. And in addition I’m now completely wheelchair bound and need help with even holding my head up much less eating or putting on clothes. I’m use switch control to type but as it’s getting to hard I’m waiting for a eyegaze device. 

Some main people in mine life is Cheetos- my POA and Grr. They is mine main caregivers and friends. Kitty is my best friend like a sister but online. Carebear (boy) was mine therapist for 5 years. And Reeses was mine caregiver for those 5 years and the best support of my life who helped me with communication like read and write. Yes me still needs lots of help with people, google (images), and technology (such as iPad speak screen and mine Dynavox) to be more than 1stgrade level. 


Ok now that you understand of me let’s talk of what’s important. Do you read or see news and story’s of parents and caregivers being told it’s ok they murder us disabled? Do you read the stories and see YouTube videos of parents (especially of us with autism and/or severe physical challenges) that talk of how hard it is to deal with us? I do. It makes me sad. I’m has been abused by family and homes because I’m to different and/or because I’m not can understand. Do you know what it’s like to be told your whole life that you’re a burden? I’m feel guilty for everything. I’m feel like a bad person every time me needs help, and well that’s a lot. Grr had to my leave my life before and me didn’t understand. He finally told me (in different words) that it became to much to help me. In his defense he has ASD to just more high functioning. Reeses was my caregiver back then and he was open of how hard it can be to take care of me. But he had other problems to. Cheetos is a new kind of person in mine life. He not has any big challenges not even common things like diabetes or anxiety and depression. He has a good job and stable housing and family that cares. He says I’m not a burden. But I’m terrified to ever show him my worst because he has no other experience with any of my challenges. What if I gives him anxiety problems because he’s never deal with this before? Obviously he’s been there now for some of my worst such as flashbacks and being physically a rag doll unable to move anything. He has handle some panic attacks and seen days I’m in to much pain to do anything. He always is wonderful. But he’s not seen my worse partly because just him working and partly because I’m physically unable to have some of my old behaviors. He’s not dealt with headbanging even tho knows it happens, he’s never had to keep me safe from running into traffic during a meltdown, he’s not had much experience with me being so disoriented from a seizure or ms that I has no idea where me am or who he is. And even tho he’s been there during sometimes, he doesn’t know how much times I’m a complete rag doll unable to move anything except my eyes or maybe a finger, or even when not that bad how much I’m unable to feed myself even with my support aids (such as active hands grip aids). Things like smiling and breathing and swallow can become very hard for me. But I’m never complain because what if this time it’s to much. Me sees blogs and things of other people with differences from autism to cp to als that talk of how we’re not burdens, were people who deserve to live in the community. I’m try to tell myself that to. But then everyone not challenged only talks of how hard we are to deal with. Even good people who care. And I think on this. Even with the mental age of a 6 year old. Has you ever met a 6 year old who has been told how worthless they is them whole life? Many girls by age 7 have eating or self esteem issues because they don’t think they’re pretty. Point is even us with low iq and severe disabilities can have thinks and feels of these things even if we not express it in a way you understand. (Behaviors can say so much you’ll never know) We understand more than you think. Me thinks of how people find it nearly impossible to go out with me anywhere because of the extra planning needed because what if sensory is to much or what if the plan changes and me struggle to cope. Even just the having to put me in and out the car. What if people is rude because I’m stimming. And what if it takes forever because I’m actually trying to type and communicate, which means I can’t drive my power wheelchair and so we have to stop and wait for me to be able to find what wants says, and all the time needed for me to process and understand language. I’m wants so hard to just be a friend. Someone people like to spend time with and have fun. But that’s just not possible. I’m can’t communicate much and when me do it takes forever. And in order to do anything with me you have to help me. Also besides little kids and other with my mental differences not many people like what me likes. But honestly I’m thinking can be a friend. You just need lots patience and be able to help me but still respect me as a person. My life is valuable even if I’ll never be a normal working person. (Fun fact I’m using apps that teach coding to 5 years olds to try learn how make things that is switch accessible on Hopscotch) I think that no matter how much help me needs both physically even with ADLs and mentally I’m still should be respect of having valid feelings and opinions. My body and my brain is not my soul. My iq does not define me. (Tip iq can be more big if given extra supports and lots more time- it can take me days to process something even with visual supports). Grr has this great system where he interacts with me and talks to me like a friend but uses more examples and smaller words. When I’m unable to communicate and when he’s taking my rag doll body like I’m a baby he makes sure to talk to me and make jokes, he even speaks my side of the conversation lol. He really makes me feel included and valid and takes the focus off what I can’t do and onto who me am. Example he may be giving me a bath and let me know he’s going to wash my armpits. Then he’ll say something like “Yes Juan I put on deodorant. I don’t need your sass” or when he’s feeding me he’ll tell me of his day and talk like he would to a not disabled person eating lunch with him.  Cheetos has a great system to where he talks to me mostly normal just try simple words and small sentences and wait super duper patient for me to take all the time needs to process what he says and respond. Both ways include me and has they times is best, and both people always pay attention to any sound or move me makes no matter how small that shows them am trying to communicate and they respond best can. But did you see what me see? Grr who takes the most care of my physical needs and is used to me being unable to communicate much more than a half smile or noise is also the person that says me can become to much. Cheetos who deals with those way less and is used to me communicating via aac no matter how slow is the person who thinks I’m not ever a burden. So here is what me has to think on, when me has eyegaze and can communicate with Grr more will me be less a burden? Or will that not matter and when Cheetos has to spend more time on my physical needs will me start to become a burden even tho can communicate more as a friend? Am me a burden more because my physical challenges or my mental differences? Or is it just all my health combined? Will being able to communicate things make me more a friend? Or will it just show how different and special and disabled me am? Better question is it really ok for society to tell everyone from us with disabilities to our caretakers and friends to random strangers that we are burdens and put all the blame on us for things we not can help? Or would it do more to realize that we’re people to and everyone needs help so instead make the community more accessible and have more supports so that nobody becomes overwhelmed? Fun fact anyone can become disabled at any time – you can have a stroke or fall and break your spine or develop MS or OCD or have a trama that causes PTSD at any age. So even if you managed to stop all differences we’re born with you would still have disabled people. And not just old people. It’s a lot for you to think on. Take your time and discuss this with others. I guess there are 3 important things that I want you to understand and remember 1) no matter our differences- physical or mental- doesn’t affect our soul 2) anybody can become disabled at any moment- yep even you 3) (related to both) even the most disabled person can be a good friend if they has good support-both people support and tech support no matter how simple the tech. If you want to see a great example and inspiration I suggest watching Special Books by Special Kids on YouTube or Facebook. Here’s a video with him and Hayden https://youtu.be/PIKP-ypaOIU

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On dependence and friendship 

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. 

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.