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
We know there can be so many problems with having autism and trying to fit in to the neurotypical world. But there is such beauty in mine world to. The way me understand things and process things is unique and can be lovely. Mine sensory processing differences can be artistic. Yes sometimes me gets overwhelmed but other times if me can avoid chaos it’s beautiful. When me can get lost in the color of the sky, very much Pocahontas like Jejeje. Mine deep love of music, me experience it so much powerful. Feeling textures, me has rub a leaf over and over for hour. Sometimes me looks silly enjoying these things but who cares because is a type of joy and love for beautiful nature most people needs. More people needs find little things to make them happy. And more personal needs loves nature so will take care of it. Mine brain may experience all these things different but me not thinks is bad. Do me needs helps to cope and be safe yes but me not wants be ‘cured’ of mine experience and lose this joy. Especially as mine body is giving up more than ever its these little things that help me. Differences can be a good thing and strength to not always a bad thing. With a little help me made a list of some good things that can come from mine differences . . . OCD helps me remember things
PTSD helps keep me safe
SPD let me really enjoy things like music and baths for coping skills
Autism helps let me be myself
ID helps me get happy more easy
Cerebral palsy helps me be patient
Seizures help me be understanding
Asthma help me learn medicine is important
GERD can help learn eat more healthy
Mine body giving up (them thinks ALS) gives me more time to study words and watch tv
Bedsores help me try move/exercise
The best way to understand the spectrum is not just as autism. Some people think is just autism and some people has a lot and some a little. Me not thinks that. There is more than just autism that makes you, you. Your personality and culture and experience to. Me likes the fruit salad model by Donna Williams. It say you has autism but there’s all this other stuff you can has to that make your autism different. Like different sensory processing disorders, dyspraxia, alexithemia, face blindness, and other stuff. There’s also a bunch of comorbids you can has and sometimes people call it all autism like seizures, mild cerebral palsy, mental health things, intellectual difference, sleeping disorders, tummy problems, etc . . . The thing is it’s easy to call it all autism but it’s not. Some things you not can do much about but is good to understand what’s exactly going on so that you can help some things. For example learning that me had seizures was super important. Learning that mine friend son has celiac saved his life and helped his ‘behaviors’. Giving mine cousin meds for his mental health helped him has less behaviors, communication more, and do more good in school.
Also there’s this thing sometimes people say everyone is a little autistic. Me not thinks everyone is a little bit autistic but let’s think of it like this. If you a great great grandma who was black and everyone else was white you’d not be black but you may have a black trait. If that grandma was autistic instead of black then you may have a autistic trait. I don’t care if you call me autistic or say I have autism, I care that you respect me as a valid person. From what me understand that what people on both sides want. Me says I’m autistic because to me it’s the same as saying I’m Hispanic. Me not has Latino. And also me thinks is like how Deaf people say it, because it means a culture and or community identity. But still it comes to respect. Like the word slow. I know me am slow, my brain takes extra time to process. So if you call me that as a fact or description then it’s ok. But calling me slow to be mean or make me seem less than you is not ok.
So me has see a thing problem with trying to share mine experience. No matter how me do it me am not good enuff. Is always a reason not has to listen to me. If me types my normal with little help from anyone me am to hard to understand or my obvious intellectual and communication problems makes me invalid. But if me gets help me am see as to smart and people think am ‘high functioning’ so can’t possibly be like the other nonverbal kids who still has behaviors. Even tho me am still having behaviors. Besides behaviors is a form of communication and brain body self defense. As me am less can type me am has more behaviors. Not on purpose but is the only way you can see if me has a headache or am overwhelmed or as pain, when mine body can do nothing and me am rag doll you not can know anything of mine feels and thinks. Judging me or anyone is bad especially based on how we type. You don’t know us. You don’t see the hours working on these words. You don’t see the meltdowns me has. And even those who are ‘high functioning’ you don’t see them struggles and shutdowns. Mine friend Grr is called high functioning autism. Him works and talks. But him also stims, has meltdowns, has trouble with things like baths, has sensory problems, and can has times of nonverbal. The thing is how much you can do in 1 way is not how you do in all the ways. Do me need more help than him yes. But that not means him not needs help to. But if all you see is us typing then you not can know what him needs. You not can see his meltdowns by him typing.
If you are read my blog for the first time here’s something you need to know for this post. Me an not a teacher or parent or professional. Am adult with multiple challenges including nonverbal autism, intellectual disabilities, and ms. So me am talk from mine experience.
This a new thing me hear people talk of lately called presuming competence. The way me understand it and thinks is the best way to understand it is to believe a person can learn. (Not to mean to ignore any challenges and say the person is not trying because you ‘know’ they is more smart.) Why do me thinks this is important? Because so many people look at a person with any easy to see physical or mental differences and think they not know anything and or not can learn anything so they not even try teach. A developmental disability means some things take your body and or brain more time to learn, it not means you never learn anything or so many people would never learn to crawl or even communicate more than just crying like a new baby. And a disability someone gets later like ms or after a stroke do not change who the person is inside. It may mean the brain and or body not can do the same things or may needs more time but the person is there.
Some people who body acts different like has cerebral palsy or ALS or even “severe autism” are really really smart but you not can see that. Think of say Steven Hawking as proof. Or Christopher hills (you can YouTube him). Or rockysclimbingjourney he has a blog to but also there is a video of him. Once the person is able to communicate you can surprise how smart them is.
And sometimes there is people like me that may have an intellectual disability and or learning challenges (like dyslexic type things). But even then if you take the time to find how best them can learn they can do things. Me learning to type was not a easy thing and even tho am 26 mine read and type is low but me learned and still am learning. People with Down syndrome learn things to and not likes when you talk of them like them is babies.
For a not school place presuming competence is like believing the person can understand things even if needs a little help or not can show it in normal way. A really good example is this. . A time me went to breakfast with someone and they sister and her son who has ‘severe’ nonverbal autism like me but was like 8. They told us we was going to the park. Before me even understand what was said the boy had put on his backpack. His mom then was acting like he had a behavior and her try to take the backpack. She did not even think for a minute that he was understanding her. The problem was they did not say when we was going to the park so to him (and me to) it was expect to be going when her say it. Another example is people that talk of a person but not to them even if them is rite there and that’s just not nice. Most of us are not Deaf (but even then is not nice) even if we take a few minutes to understand. My friend Grr does something me really likes, him will talk to me even when him know me not can respond back. And at doctors him tells them to ask me stuff even if he needs to speak for me, he gives me a chance to be involved and always tells them to wait if he can see me am trying to understand or communicate something no matter how long it takes. And Cheetos helps me understand things that may be important even if hard to understand. For example some politics like what is going on with Medicare and Medicaid. He explains stuff in way that makes sense. A lot of people not thinks we can or needs to know of things like that. But we do so we can advocate for ourselves like the cripthevote thing. A lot of people who see me in my power wheelchair especially when they see me not can talk act and talk like me am not a real person with thinks and feels. Me has see people who respect and communicate with toddlers more than me. And not to say they should not respect and communicate with them, but to think of this . . If you can believe a person who is like 2 has something to say then why you think a person that is 26 (or any other age) not has something to say? We has see and experience lots of things. And similar people who see me type not so good just sort of dismiss me because it’s obvious that me has challenges. Mine thinks is just as important. My brain and body has challenges but mine soul is fine. Especially when say we’re talking of something related to autism which I live with. And related to that even tho me am different am able to be a good friend. Maybe a different friend than you has but like me tell Cheetos I may not be the best at understanding everything but am good at listening and being understanding and support.
Ok the part to remember is to always believe a person can learn and understand things no matter how much help or time they need. Be creative. Also never ever give up finding a way for a person to communicate (gestures, pictures, words, etc )
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.
What have I done today? Mostly typed this slowly but surely, mostly from inside my tub. Yes there was a reason and me tell you in a minute. But 1st me wants to say why am typing at all. Because this is 1 them times me am to overwhelmed to knows what am feeling and thinking so typing helps me focus from the racing in mine head. But also because me wants support but not to bother nobody because it’s not an emergency and mostly me prolly needs be or get used to this.
Anyway the reason me was typing in tub was because was stuck. Worse than stuck, me fall not 1 but 2 times off the safety seat, maybe not so safety seat. Maybe this was my mine fault but even then me wants rant and be upset. Why? Because it should not happen. Me not do anything crazy. All me did was shave and brush mine teeth. Now sometimes me ask Grr or Cheetos to shave but them is working and me was itchy so me do it. It was bleed after but no more itch. And then me remember not brush mine teeth today so did that to. That’s it. Then me got in the tub. Me took mine time not that me has much choice anyway. But me guess was just to much ask mine arms do all mine hygiene. After all this I’m prolly not getting off the bed for tonight.
These things is horrid. Part of me is super proud of how well me do. But part of me is so much upset of the struggles me go thru and how much slow the state is to help me. It’s scary. Falling in the bath is able to get hurt, but me can use bath wipes when not can get in the tub. But what more scary is than me can barely eat or drink or take meds. Almost everyday me choke on something even if it’s just air or saliva. It takes me 3 hours to drink my brekky and is only the size of a Starbucks medium/grande. And that may be all me has all day besides a few sips of water. These things can make problems. Me has passed out because not enough air and unable to move. 1 time started drowning/choking laying in the tub, now that was most scary even if me finally got mine head move to side. I may not be able get dressed or leave the apartment for days and has already had a few minor bed sores but am get better at trying to move a little more even on bed. And what if something happens like a fire and I’m here alone unable to get in my chair. Mine eyegaze device is approved so hope to has soon but there is things that a computer not can do.
Me will stop now. Me am happy to has some great support people who do what then can when them can and for the service people that worked and is working to get me things like the eyegaze device and the new power wheelchair with better support. Mine insurance lady and doctor is pretty good to but there is things they not can do because has wait on the state DRS. And with the new changes and stuff me am scared will soon not be able has the things me need to live in a community and be forced into another institution and not be taken good care of or has freedom be myself to best me can. But for now me will try focus on what can do and what has.
Do you know what is funny but not ha ha funny? Me am typically for me. But even this me has to invalidate mine feelings because so much scared to upset anyone else or be a burden. Everything me type me has thing in mine head and heart that says mine problems is not that bad , that me not should bother anyone, that mine needs is not as important as them comfort and/or stress, that if them gets upset is mine fault even tho me not ask for be different or has these challenges especially now with ms. In society everything is the on the person having the problem/differences/challenges whether is autism or needs wheelchair or Deaf you has to work all the extra to accommodate everyone else instead of society making everything accessible and being understanding. Do you know how not fair that is to expect a person to not only work extra hard to function best can but also to work even more extra hard to be the understanding accommodating person for everyone else because they not can handle that you’re different and needs help even if still independent. For us to always be ok making all the sacrifices and being the scapegoat and having our needs ignored , neglected , not understood even by people that we is most close and or depends on that may not know what they is doing or they mean good is harm. Like me was tell Grr a day us with challenges is so much considered a burden that is normal for parents and caregivers to neglect or kill us and most everyone says it’s ok and understanding that we was just to much stress. No wonder me stay scared be a burden. When me was little mine birth family tried to kill me. And me has been abuse plenty. And even not so long ago abandon by people because they not could deal with me and since then mine health has only got more bad and has more needs. Ok for real me am done now. Thanks for reading. And again me will say that me am happy for the good supports me do has.