More than a diagnosis

I know it’s been forever. Sorry. I’m will gives a update then what has be want type of for long time.

So am still alive, kinda lucky it’s been close a few times. Mine body has been mostly stable since get the portable feeding tube pump so am having food and water 24/7 and meds more. Still not knowing exactly what wrong- right now is thinking maybe just a bunch of stuff working together especially since was almost always alone- such as starvation, seizures, low oxygen (which seems maybe related to seizures), not sleeping, severe dehydration, growing up with cp and autism- possibly other stuff that we not can find yet. Some things could be possible but we’ll never know because I have no childhood or family records to help with diagnosis. Hoping to start ot/pt again and hoping it will help this time since last time me wasn’t having food and water. Maybe will wind up getting oxygen but who knows. But even with mine body being more stable mine thinking brain is still come and go and seem get more bad with time. Me do have the eyegaze device and it has more good AAC so mine words look better even if I’m not always making sense. (Random awesome sauce note this AAC is even bilingual.) Cheetos is still a huge part of mine life and idk what I’d do without him. Can me say a secret (not of him)? Me not wanting people worry but even tho am has way less seizures than used to it seems like am having more bad kinds more. Like me used have hundreds of invisible seizures every day, and now me not but it seems like now am gets body seizures every week and before think that was like 1 time a month. Of course nobody really knows because me was alone like forever. We tried having help from a program that sends “trained” caregivers cuz drs approved me. But it was bad, they not can do meds, use the hoyer, work a feeding tube or like anything me needs, mostly just watch me, and of course not know how talk with someone who is nonverbal, and the lady put my neck where not can breathe. So then Cheetos and Grr has get a personal assistant and it’s a little better but not much.

The other thing I’ve really wanted to talk about is diagnosis. It’s weird because I’ve had some diagnoses for lots of years and almost no support like autism. But like I have no official diagnosis of what is going on but they’ve been able to get me eyegaze device and power wheelchair, but are having a hard time getting a pulse oximeter even tho it’s documented I have severe asthma and get low oxygen during seizures. Maybe it’s just me but I’m thinking that if you’re struggling whether they can find a official diagnosis or not you should get help. If they waited for me to have a diagnosis for the feeding pump I’d have died. Possibly part of why/how Me has get so bad is because I’ve not had any help with things like food and meds even tho it was know that me had lots trouble because autism and stuff. I’m was thinking had more to say but mine thinking brain stopped and never did finish this so I’m just going to post it.

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A happy post

I don’t want to spend this post on the sad things. So instead me am going to type of Cheetos (my person, not the food). He’s really been everything you can need or want in a support person. For the first time ever me feel like someone is safe and really loves and accepts me. You know how some people like to say ‘until all the pieces fit’ when they talk of autism? Well maybe they just need to look more hard. Cheetos sees how all my pieces fit. He’s even able to communicate with me when I’ve completely lost words. He’s able to send emojis and other pictures to me and understand what me sends. He doesn’t know how amazing that is. And the other day even tho he was not feeling good he still took care of me, and even went outside to get me something. Some things he does is big things like picking me up and transferring me a bunch of times during the day. Other stuff is kind of small but means the most like turning on the captions and giving me taste of stuff even tho me not can really eat. Oh the other day was him bday. So we went to this place with him friends and play mini golf. Now that not seems like a big deal. Except mini golf is not accessible. And almost impossible being quadriplegic. So he had to lift my chair a whole bunch and help me bunches. At first Me was feel bad because it took me forever and Me was thinking it was keep him from having good time, but after time Me see he was still having fun with him friends and me start has fun to. It was nice to be included and accommodated so easily. He was super encouraging and patient and keep making me laugh And he kept checking in making sure me was doing ok and if needed anything, not that me was going say if did and mess up him time with friends. Me thinks the best part was go karts. It was mine first time, they carry me and put me as a passenger next time to him, and was fun like motorcycle. I’m so used to people hurting me or taking advantage and making it obvious how hard it is to care for, even before me was quadriplegic. It’s super amazing to has someone so wonderful who always does whatever he can to take of me needs and never complains. He’s always doing so much more than me expect him to. Ok so the other day in the car me fell to the side on the window and then later on the side on him. Me was be funny and say rather fall on him than the window anytime, and he was joke say he’d rather me fall for him than on him. It was funny at the time.

Short update 

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. 

Goals for living 

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

Beauty in my autistic world

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 spectrum of autism spectrum explained 

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.

Sharing your autistic experience 

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.