I’m already on here so may as well finally remember to type this. Me has been work on for some time and me thinks is done. Me almost called this depression or politeness? Sometimes people thinks me am depressed. Usually it’s very easy to say no me not and most that knows me super can agree is not. But the last little bit me has to think on it. Is me? It’s not like would know. Alexithymia makes it almost impossible for me to understand mine feelings or even others be it sad or mad or hungry or cold or something else. Now me knows that they say some people on the ASD spectrum shows depression by avoidance more than sadness or other more neurotypical ways. But the thing is even if me can almost agree am avoiding things and people me has other reasons. 1 of them being polite and not wanting to upset people. You know the if you have nothing nice to say then not say nothing. Besides me likes make people smile not make them upset. And me not wanting peoples think is all of me and me not care of them problems to or that me only wants them when needs things and not just to has fun. And also a lot of things is just hard and hurts and not always possible. Even typing can be so hard. Me has always had problems with words/language thanks to nonverbal autism and aphasia, but now it’s even more hard, even using a switch can be hard. And all of it takes time and just is not always worth it unless someone else starts and me not wanting ignore them. And then there’s crying which is something me can blame on ms, me used to never cry but the last few years it slowly became a thing even tho me not usually feel sad. And the thinks on being a burden. The thing is how much can you really call that a silly think just from depression when on fb so many days is stories of people like me being neglected or killed by those supposed to care for them and so many people are just like it’s understandable because all of the stress and put that with my personal past of people hurting me or leaving me. Some people think you can tell someone is depressed because of barely eating or sleeping. But for me I’m barely able to eat because of choking, and I’ve had insomnia and sleeping problems mine whole life like many with autism or ptsd. Staying in bed for days and lack of interest is also physical reasons. Well I still have interest just not ability. The thing is I’m not sure you can say for sure if me has depression or not. It’s been a thing mine old therapist used to think of because of mine autism and alexithymia. And now with the new challenges it’s even more hard. But you know a thing him did say was even if me was it wasn’t mental illness. That it was a normal response to what me was going thru. And honestly if me am now me thinks the same is true. I’m going thru a lot and in addition there’s some pretty scary things on the news and Facebook that is relevant to me. The best me can do is try communicate with mine support people best me can and do what we can to make things more easy. And this is true for anyone with differences/disabilities or in general. Even if for some people taking meds for depression is part of that. For me I’m personal immune to those and most meds even pain killers. At the end of the day people need to understand that even tho depression can definitely be a serious mental illness, it can also be a normal response to depressing things. And to never ever dismiss how a person feels or what is going thru because you think that being sad for more than a few minutes must mean something is wrong with them brain. Like all the people most especially teens that get in the hospital for depression or even anger or drugs and put on meds and then put right back into abuse or homelessness. When maybe then not need meds so much if someone was able to help with them life. But also even if it mental illness like mine ptsd and OCD you should still be understanding and not dismiss because ‘it’s all in my head’. Like dumbledore says of course it’s all happening in your mind but why on earth should that mean it is not real. Ok I’m done and if you not remember most all of this just remember to be supportive and understanding of what a person is going thru.
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
I have been working on this a long time. It’s a bit of a long post but it’s really important to me. It’s easy for people to recognize physical differences. But most differences aren’t visible, especially if you don’t know the signs. This is super important to always remember because it’s easy for people to judge or make assumptions of people by what they see. I’m going to talk of some of my invisible challenges to help you understand. They are of course more than what I deal with but I can only talk of me and my experience. I think a big problem is so many people judge people and don’t even try to understand what is going on that they can’t see. And it’s a very big problem for those of us with problems communicating. We may not be able to express what’s going on so people will think we’re acting out. And even caregivers and doctors may be fast to blame our diagnosis instead of looking for a reason like pain that can be fixed. Actions are communication to even if you’re verbal. Body language can say a lot of what a person is going through if you try to understand.
So one thing is im nonverbal. You can’t see that. Even when I have a communication device most people think it’s a tablet for games. So people are always thinking I’m rude or at least deaf because I can’t talk. And when I’m making noise they think something is wrong with me even when I’m doing the best I can to ‘talk’. I don’t need to be judged by my lack of words, i do the best me can. Related to that is i have auditory processing problems so a lot of time I don’t understand what’s being said or that’s it’s to me. I may understand minutes later but then it’s to late.
Pain and fatigue are big invisible challenges. You can’t see them. Sometimes people think you’re being lazy or pretending to be unable to do something especially if sometimes you can. All kinds of ‘disabilities’ have pain and fatigue as big parts. Such as my cp and ms. There are days I can’t move literally because my body is fatigued, and there are days I barely move because everything hurts. Some people who don’t look physically different have these things to.
Anxiety and related stuff. I get anxiety attacks, panic attacks, intrusive thinks, and flashbacks and other stuff from PTSD and OCD. I’m not trying to be difficult or emotional or perfect or ignoring anyone. These things are very real and can take over my brain so that I’m stuck on something. I may not noticed anything around me. I may be obsessed trying to fix something or put in order or I may just sit there blank or crying. Or maybe I’m just look a bit distracted and then snap. It’s a lot to deal with and lots of people have these things and deal with them everyday but nobody knows because they smile and or hide. Depression also goes here.
Sensory processing problems. Lights, sounds, textures, smells are all easy to be painful. I’m not just picky because I won’t eat stuff or wear things. I’m not having a behavior problem when I’m running away and hiding or when I’m covering my ears and eyes and being loud not moving or even having a meltdown banging my head. I’m in lots of pain and my body is trying to protect me.
Vision problems. I have problems seeing even with my glasses. You can’t tell that by looking at me. But if I’m moving slow or not responding to something I see there’s a reason. My eyes act funny some from cp and from ms. It can take me a few minutes if at all to fully understand what I’m seeing. Especially if it involves words or something moving. A big problem with this for me is crossing streets. Especially before my service dog and even with her I mess up lots and get in the way of cars. People get mad like I’m doing it on purpose. I’m not and it scares me when I almost get hit.
Seizures. Yes some seizures are invisible or at least don’t look like seizures. Some seizures you may fall and or shake. But sometimes my body just gets stiff an my face blank. Or maybe my start blinking funny for a few seconds. Or My body just barely shake or jerk. But if I’m acting funny then I may have a had a seizure. It can make my head hurt or make me puke or just be really confused or tired. I may not be able to understand I had a seizure until way after it’s over but it will still affect me and so people around me should be understanding. Not thinking I’m rude staring or just acting silly.
There are also lots of other differences from different neurological things. My brain gets blank and I can’t think. I have problems making my body listen, sometimes it moves on it’s own or doesn’t move at all. I can’t remember something very long and get stuff easy confused. I can’t tell if I’m hungry or my blood sugar is low or I’m cold or other things, and until it’s figured out and fixed I’m uncomfortable and it shows. It’s like a baby, I don’t understand what’s wrong and I can’t say anything but if I cry or something else It lets people know i need help. Sometimes people think I’m mad at them and really I’m not I’m just in some sort of pain that I can’t explain.
You can’t see any of these things but it’s so easy to judge me by what you do see. I look like I’m lazy and bad and rude. I’m not. I’m working super hard to function even tho I’m in pain and having a hard time. And sometimes it’s to much for my brain and or body. People are a little nicer with me always being in the power wheelchair but not always. And even if so it’s not fair to everyone who has these things or others and don’t have a obvious physical problem. Anyway I just think people need to remember this. Because anyone can be having a invisible challenge or differences; a child with processing problems, a teen or young adult with pain and fatigue, a older person with anxiety issues. Or any combination. These things are not stereotypes or labels or excuses , they are real problems that affect real people. And you can’t see them. So instead of being upset at a person try to think of why they did what they did. We don’t need hate or judgement in this world. We need love and understanding and patience and acceptance. People are all different and that’s beautiful.
I am writing this so people can understand me a little better and what I have been through so that they may think about it when they interact with other people called Autism. For those who think I’m high functioning because I talk of independence, sorry no I am not. I talk of independence because I due to abuse and stuff I was homeless a lot , and because of that I don’t have the help others had as child or adult. Every time I go to hospital they want to put me in a home- but I don’t want to. I still head bang and bite. I am nonverbal and am incontinence. I love Disney and Rugrats. I have lots of Minions and Paw Patrol and stuff animals. I can’t always make a bowl of cereal if I can tell I need to eat and I need Allie help to not run into traffic. But I am most happy with my life. This is the only life I know. I’m not sad for a life I didn’t have, even if I want stuff sometimes. My iPad air 2 helps me lots and so do my Dynavox with schedule and timers and more.
Do I have less behavior than I did before as child? Yes. But not because I got better or cured but because my environment is better, for somethings I can use Dynavox, but mostly I learned to survive. To survive you have to hide. And if anyone see you then you have to nod and agree and let then do anything they want. At 25 for the first time I hear (on Kreed world) cooperation not compliance. After learning what it means I like it but most people don’t do that. Behavior was and still can be the only way my body can handle stuff and the way I can communicate. It’s not in my control. On my worst days I can’t even hide before it happens. But I learn to survive so good that me did not be seen unless me could be okay. I’m just now trying to let myself be me again and not scared of others.
Ok so what do I deal with besides Autism? PTSD as you can see by the above. I struggle with that. I don’t think I struggle with autism itself but only some things of it and mostly I struggle with society. But PTSD is hard, I get so scare to even think for myself. I have nightmares. I have flashbacks that are like nightmare but you are awake. Most of it is from obvious abuse and taken advantage of. But some of it is from people and programs who may have mean well to teach me better. I have been restrained over 6 hours because I needed to brush my teeth. In residential and in most hospitals I learn that to show any communication mean I was going be in trouble and hurt (because they didn’t understand). So now my reflexes is to be quiet and to protect myself if am touched.
Sensory processing issue are hard for me. I can’t understand lots of noise or things I see. I always always need music, it’s been the single most important thing all my life, and also sunglasses. Well now I have regular glasses but they are dark like sunglasses. We didn’t know I need them until was adult. People are hard for me because I have hard time understanding what they say and they are always moving to. If I focus on something else with my senses so I can understand them they get upset because I’m not paying attention. I am hard with textures, I keep a stuff animal and other things for my hands to calm. And always have stuff to chew, bite, suck especially as they don’t like me use my fingers.
I also have cerebral palsy and juvenile arthritis. My body doesn’t always work. Sometimes my hand goes crazy not like stimming where it has more rhythm and feel good, but just crazy. And sometimes my legs forget how to move. Sometimes my eyes can’t focus. I drop stuff a lot. I feel funny a lot and a friend eventually explain to me that I’m in pain even though I don’t exactly understand. That sounds different but it’s true if I feel funny I could be hungry or have a headache or arthritis is bad or I’m hot or anything. And it’s hard understand because if I am in pain most the time I can’t tell you how much because I have nothing to compare to understand how different for me or others. And because my brain forgets most stuff fast, I can mostly just understand the present moment and not remember any different time to compare. Do you know what’s it like to tell your legs to move but they don’t? To be in wheelchair sometimes or stuck in bed because you’re body don’t listen? For everything even sitting and holding something to eat to be hard but you do it because that’s all you know and because if you don’t people will be mean. To feel funny but not understand or be able tell anyone. This is my life, my normal and until recently I wasn’t even know it not same for everyone.
I have OCD. Some parts are obvious like I need things a certain way and I’m obsessed with numbers and I’m really clean like sometimes I need 5 showers a day clean. The worst part of it you can’t see where my thinking is stuck. I may think about a thing good or bad for days or months. I get obsessed with a food or toy or movie. I have to do something or by something and I can’t help it. Now this is hard because sometimes I really like a thing and sometimes I don’t but my brain needs it. And it’s hard to explain the difference, and more hard when close like I love minions but I don’t like bed spreads but when I was obsessed I got one because it had minions. And then there a thing called intrusive think. It’s a think in my head that I don’t want but not hallucinating. Most people have this once in a while. But for me it may not stop. Now most people with this know they don’t mean it, but I can get confused and sometimes act out because all I want is it to stop.
I am transgender. Now that’s not a thing people would expect. They don’t think I can understand that to say it. And they were almost but not enough right. Until I was 17 I didn’t understand that I wasn’t a boy. I really think I was. At 17 I was in residential still and one day I finally understood I was suppose to be a girl. But I didn’t feel like a girl. After residential I got in a shelter and a friend there help me understand. I had a therapist (for over 5years) who talk with me about a lot and help me understand trans and other stuff to like ocd and autism. And my doctors agreed because of some my medical test look male. I forgot that means I am a type of intersex, but people know the word transgender.
I also have other stuff like seizures, my blood sugar is funny, I have stomach issues, and lots of allergies, and heart problems and lung problems (some related to CP), and some other stuff. They can make me have behaviors even if I don’t understand. People make it worse, if I am alone I will lay down. But people always want to talk and move and do stuff and they don’t understand I need to be alone. I’m trying to learn to say I need a break. Yes I have meltdown alone and you may find me banging my head or biting or something, but I do that less alone. Because I can keep my senses ok in my own space, and I don’t do stuff unexpected. If I need to go to the store I plan it out- and it can take hours or weeks to do, but other people will just say on the spot to go and I get so confused about what is going on.
The other thing about is because of all this stuff I need things a certain way. I have to understand what is happening. I need things to be in order and everything where it should be. I do my best with help to stay on a schedule for everything even eating and going store and park. I don’t eat a lot of different food (mostly ensure type drinks and gfcf pancakes and sweet potatoes). I like things the same. I love my world of color and music and order and away from people sensory. It’s not that I don’t want to ever do anything new or ever be around people but that I need support. I need time to prepare. I need it explained in detail with pictures so that I can process. If you tell me we’re going to the store I need to know yesterday, and how long and what store and what do we need and what else. It’s not because I want to be difficult. But I get very confused. I don’t always recognize the street I live on (thankfully my service dog and Google maps do). And I need to prepare for sensory stuff and practice the movements for my body. I need to really understand or my body and brain may have a panic attack or anxiety attack or shutdown to protect me from to much stimulation physical and mental. Sometimes it looks like rocking or biting and other times it looks like me way to quiet or acting confused. And of course sometimes those mean I had a seizure.
The moral of the story is that I’m complex. There’s a whole lot going on inside me that you can’t see. I don’t like when people say I won’t do something when I am trying my best but I can’t. Just because you think it’s a easy task doesn’t mean I do. Little things like eating or understand what you say or getting out of bed can be super difficult for me. Don’t look at behavior as being bad, look at it as communication. My body is telling you stuff that I can’t. It can tell you about a seizure and about CP and more even though I may not be able to understand or find words to tell you. A final note my abuse and stuff both on purpose and not have helped me with some stuff but at a high cost. I don’t understand when I can say no or when a person is hurt me on purpose and so I let them because I trust if they say they love me or that it’s to help me. I would be better if I could have more behavior that helps people understand what is wrong instead of me being so quiet until I can’t move or completely lose control. To this day I don’t always get the medical help I need because I just hide and because I was not teach of Doctor stuff so sometimes I wind up in the hospital really sick because I didn’t understand. Nobody wants to see me, to deal with meltdowns and shutdowns. They want to pretend that because they only see me when I can leave the house smiling that I’m great, and I let them because I don’t want to be homeless or put away again. Instead of helping me mostly they made me worse, I have nightmares and have been rape because I was afraid to express no. I agreed to a lot of stuff that I didn’t understand or like because all I knew was to do what others wanted so that I would not be hurt, by being homeless or abused or other. And you should always listen to a person with differences about how they are- we live with us 24/7 trying to make us feel better. The final think is remembered Kreeds world #cooperation not compliance and #nolimits.
P.s I may try to type more by using my Dynavox with the pictures to help, but more short since won’t be take months to get ready.
List, not poem.
Things u can’t see. Not having a body. Color of sound. Texture of emotions. A body so tired of being forced that it can’t move, even freely. Words melting, swirling. Grasping at meaning. Memories. Repetition. Cut & paste. Fragments of the now. The border of wanting to be free, wanting to be me, y wanting to accepted. Hidden patterns of the clever robot. The signal to breathe. World spinning. Not seeing 3D. Choking from thinking 2 hard. Realness of hands, of tuch, comforting until unbearable,to mush of a good thing es bad. Hrs, days, wks translate into words. Me. Drowning on the air thick w humanity. A sol hiding en a mind, guarded with a body to protect it from the outside world. The wrong kind of smartness. Pretending. Trying. Stranger in the mirror. Imprints of souls. Forgetting. Muscles twitch o freeze seconds, minutes, hours. Confused brains. Tinks speeding while the body rest. Not no-ing. Doubts. Difference of perception of realities. Blurring. Method to mi madness.