This is going to be a short post. But a very important post. I don’t want to bore you with all the details. And me not has the energy or strength to say as much as me wants. But here’s the short version. Pretty much everyone agrees me has ALS even tho the neurologist can’t or won’t officially say so until me has a few more tests just in case. I’m on the feeding tube and pump now and it’s helped, so has the hospital bed. There so much trouble trying to get the eyegaze device for communication and I’m almost completely unable to type. Soon me won’t be able to at all. It’s sad because me has not been able to communicate most my life and now that me learn words mine body isn’t able to share them. Me got a nice power wheelchair but can’t get proper supports for it for my head/neck and such until has officially diagnosis. The insurance has been working with the state to get me more care at home, it’s not a easy or fast process. They find a place to accept me for some homecare, but then the place try to give me less than was approved. The thing is we know that I need 24/7 care, even at night mostly to help position so not gets more bedsores and to keep from choking on my saliva. But a nursing home isn’t the answer. None of them are trained to work with all my challenges. I have neurological differences, mental illness, and severe physical challenges. Plus if me gets sent to a home they will just make me lay in bed all day and not can get my eyegaze device so not will be able communicate or even watch tv. And when me needs a tracheotomy tube for breathing it won’t be a option. Me will have to die because nursing homes can’t provide the 1:1 care needed for that. So Cheetos made a gofundme to try to raise money to keep me at home. If you can read it and maybe share or even donate a dollar that’d be super awesome. Me will try typing more a different day, but it maybe a while. https://www.gofundme.com/tiggys-mobility-fund
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