I have a few things. So me am not done with tests but we saw my hearts and lungs are starting to fail. The hospital has offered hospice care so they think me am dying soon. And still this neurologist won’t give me the official diagnosis until after other tests. And without it we can’t give me all the support me needs. But maybe after the EMG next week she will. I’m not sure it really matters much now anyway. On the plus side Dynavox sent me the eyegaze device for now while they try to work with my insurance. My friend find a thing for hippotherapy which is really horses not hippos so we asked my doctor if she thinks can give me prescription. Me thinks the best news is Cheetos say when we know for sure me has little time left me can spend my last bit of time living with him. Me stays there sometimes for a few days already but I’d like my last month with him.
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.
I know it’s been a long time me not type and am sorry. Today me will be copy and paste a few posts me has be work on type for a few months. But before that me will tells you what is going on. A lot of why me not be type is it’s become to hard. Even using switch control mine body starts hurting and gives up very fast. Me has do a few tests and the new thinks is that me has ALS not the primary progressive multiple sclerosis after all. Me has 2 more tests and then hopes gets official diagnosis. There has be problems with gets the eyegaze device. The insurance lady says will talk with a person and tell us next week what is go on. Me has the approval so me am confused. Mine swallowing study thingy to talk of feeding tube was moved to next month but mine doctor is going to call and try to has an emergency study because all mine bones is show. Me can see mine ribs in mine chest and me was not even know ribs was in your chest. Me has had bedsores because not can moves mine self much on mine bed but am try mine best.
The 2 more good things is DRS finally do the assessment thingy so in 2 weeks will tell mine insurance how much help me can has at home because not wanting to nursing home at all. And the lady and Grr was talk and it looks like me will has a big score to gets lots help. Us was ask lots things of what me can do and me has say thinking on it me am surprised am alive but me has always be survivor. The most good thing is Friday Cheetos will takes me to get mine new power wheelchair. It has lots of supports so me not will fall out.
Me has to say me loves Cheetos. Him and kitty is what helps me try be ok. There has be days where me am has bad thinks because is like me will never get help. Me spend most days on mine bed poking mine bones and try to move enuff to not get more bedsores. Is like am being left here tortured by mine body until die with no help. But me knows Cheetos and kitty loves me even if they not can do much. Me am happy of Grr to. Him takes me to most mine doctor things and him and Cheetos call everyone to make the appointments.
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 )