NVLD and EDS

He/they Autistic and NVLD, hEDS, ADHD, POTS, gastroparesis, migraines, Anxiety, depression, OCD, CPTSD, chronic fatigue syndrome, delayed sleep-wake phase disorder, fibromyalgia. Pic is komoworm's Person Maker picrew

[nvld-hedslife]

Ok so you know how a lot of tattoo shops have a deposit you have to put down when you schedule the appointment? I don’t like this because I’m chronically Ill and disabled and I never know when I’m going to get sick or have a flare up and I feel I shouldn’t be penalized for that. Now, a cancellation fee within a certain amount of time or no-show fee is completely different imo and are justified because if I get sick and don’t tell them ahead of time enough, then they don’t get paid and that’s a shitty situation. But like, I shouldn’t be penalized with a deposit just because I’m more likely to get sick.

I hope this makes sense and I’m willing to hear the other side of it because I totally understand it is important for y’all to get paid and make a living.

The way the piercing/tattoo studio I go to does it is you have to give them your credit card info when you schedule so that if you no show, they can charge you, which I think is totally acceptable and accommodating.

[nvld-hedslife]

WHY IS TUMBLR LOGO RED. ANGRY. AUTISTIC ME DOESNT LIKE CHANGE

[nvld-hedslife]

What IDIOT invented hips. I would like to have a very calm angry discussion with them. Just some constructive violent criticism.

[alexandriajadereads]

A singular scream comes from the void…the void is me

[nvld-hedslife]

It me

[nvld-hedslife]

I have a question that I don’t have an answer for. I can see both sides of the debate so I’m curious, what are y’all’s thoughts?

Are mood disorders and other mental health conditions— specifically bipolar disorder, generalized/ social anxiety, OCD, schizophrenia, and schizoaffective— a neurotype or neurodivergency? Why or why not?

Please be respectful of each other’s responses. This is a learning, curiosity, and growth question to see what the community feels, because I don’t know what my opinion is on this.

[sleazyowl]

It's so funny when you're chronically ill and ppl tell you to "get well soon" and you're just like... Thanks, I won't.

[nvld-hedslife]

I want to say “you too” to confuse them, but alas, I am a coward.

[radicalurbanista]

you can’t support autistic people and support the police. No amount of paint jobs or sensitivity training can stop police from killing with impunity

[thefirsthogokage]

Oh look, and it’s the puzzle piece on the car, for Autism Speaks, which is run by zero autistic people and supports autistic genocide.

[lifewithchronicpain]

Home now. Toradol did it's job. I'm still in high level pain but I can move without screaming in agony. I didn't want to stay anyway, that's the last thing I fucking need.

[nvld-hedslife]

Toradol is amazing. I have a some at home for self injection emergencies.

[ezgender]

All LGBTQI+ Wikis are being merged, without their consent. Except for the Ezgender Wiki.

I wish what I just said was an exaggeration. The LGBTA Wiki Staff wasn’t consulted at all about this, but was abruptly told today the following:

We are excited to introduce LGBTQIA+, a new wiki community that will serve as the home for all information about sexuality and gender identity. This will be a consolidated version of the former wiki pages and at launch will include just the main articles needed to help people who are searching for information. We worked closely with a number of LGBTQIA+ individuals and allies as we developed this wiki and to ensure the most accurate information continues to live on this wiki, there will be an emphasis on sourcing articles. For example: as content is added to this wiki, only official terms that are recognized by people working on LGBTQIA+ issues will be approved.

As we begin to consolidate our LGBTQIA-related wikis, we will redirect all users to our LGBTQIA+ wiki. To ensure our content is inclusive and provides a wide range of information, our admins (who are LGBTQIA+ community members) have thoughtfully been building out wiki pages that represent a wide range of topics covering all identities, sexualities, historic LGBTQIA+ events, activism and more.

One exception to the merge is the Ezgender wiki, which will host articles outlining specific genders, orientations and pronouns, including pages of xenogenders from other wikis. The main LGBTQIA+ Wiki will have a page on xenogenders (with examples), but not the thousands of pages as on other wikis.

We are giving you the upcoming few weeks to make sure that your content is migrated to EZGender as necessary or, if you so choose, exported to another host.

[Please click here to read the full announcement from Fandom Wiki Staff]

No one on Ezgender Wiki Staff was consulted about this at all, and now  from my understanding, we quite literally will become the ONLY Wiki able to host specific xenogender terms. Essentially fandom has made the decision our wiki will be the literal only place that continues to list xenogenders and microlabels, and the combined wiki they’re creating will only feature terms “official terms” “recognized by people working on LGBTQIA+ issues”. So, site wide transphobia and an encouragement to gatekeep xenogenders. This is a recipe for disaster in general - For example, there are plenty of prominent activists who claim pansexual, nonbinary, or bigender aren’t “officially recognized.” 

Everyone at Ezg feels this is a ridiculous decision that undermines the spirit of LGBTQI+ education and opens room to gatekeep “un-recognized” identities. I’ve been talking to Staff from LGBTA Wiki, and they feel the same way.

Here’s what you can do to help:

Please sign this petition letting Fandom know you disprove of this decision.

Comment on the announcement post linked above and let them know you don’t think this decision was fair and something else should be done. Don’t be insulting, but tell them this is a bad decision.

Signal boost this post. This decision was made weeks before it was to happen, and again without even letting any of the Staff of these Wikis know this was a possibility. People need to know about this. 

[nvld-hedslife]

EZGender was deleted. There is a new wiki called Queerdom that is being created. https://queerdom.fandom.com/wiki/Special:AllPages

All pages | Queerdom Wiki | Fandom

[ezgender]

All LGBTQI+ Wikis are being merged, without their consent. Except for the Ezgender Wiki.

I wish what I just said was an exaggeration. The LGBTA Wiki Staff wasn’t consulted at all about this, but was abruptly told today the following:

We are excited to introduce LGBTQIA+, a new wiki community that will serve as the home for all information about sexuality and gender identity. This will be a consolidated version of the former wiki pages and at launch will include just the main articles needed to help people who are searching for information. We worked closely with a number of LGBTQIA+ individuals and allies as we developed this wiki and to ensure the most accurate information continues to live on this wiki, there will be an emphasis on sourcing articles. For example: as content is added to this wiki, only official terms that are recognized by people working on LGBTQIA+ issues will be approved.

As we begin to consolidate our LGBTQIA-related wikis, we will redirect all users to our LGBTQIA+ wiki. To ensure our content is inclusive and provides a wide range of information, our admins (who are LGBTQIA+ community members) have thoughtfully been building out wiki pages that represent a wide range of topics covering all identities, sexualities, historic LGBTQIA+ events, activism and more.

One exception to the merge is the Ezgender wiki, which will host articles outlining specific genders, orientations and pronouns, including pages of xenogenders from other wikis. The main LGBTQIA+ Wiki will have a page on xenogenders (with examples), but not the thousands of pages as on other wikis.

We are giving you the upcoming few weeks to make sure that your content is migrated to EZGender as necessary or, if you so choose, exported to another host.

[Please click here to read the full announcement from Fandom Wiki Staff]

No one on Ezgender Wiki Staff was consulted about this at all, and now  from my understanding, we quite literally will become the ONLY Wiki able to host specific xenogender terms. Essentially fandom has made the decision our wiki will be the literal only place that continues to list xenogenders and microlabels, and the combined wiki they’re creating will only feature terms “official terms” “recognized by people working on LGBTQIA+ issues”. So, site wide transphobia and an encouragement to gatekeep xenogenders. This is a recipe for disaster in general - For example, there are plenty of prominent activists who claim pansexual, nonbinary, or bigender aren’t “officially recognized.” 

Everyone at Ezg feels this is a ridiculous decision that undermines the spirit of LGBTQI+ education and opens room to gatekeep “un-recognized” identities. I’ve been talking to Staff from LGBTA Wiki, and they feel the same way.

Here’s what you can do to help:

Please sign this petition letting Fandom know you disprove of this decision.

Comment on the announcement post linked above and let them know you don’t think this decision was fair and something else should be done. Don’t be insulting, but tell them this is a bad decision.

Signal boost this post. This decision was made weeks before it was to happen, and again without even letting any of the Staff of these Wikis know this was a possibility. People need to know about this. 

[nvld-hedslife]

Mango Coconut “Congee”— Gastroparesis Friendly

Yummy sweet rice porridge that is gastroparesis friendly.

Ingredients:

-1 cup sweet glutinous rice

-64oz lite coconut milk or almond milk

-2 cups mango purée or mango juice

-Handful of mango cubes, diced/ minced to death. Mushed up frozen mango works

-1/4 cup rock sugar

-cardamom to taste (abt 2 tsp)

Instructions:

1.) Rinse 1 cup of sweet glutinous rice in cool water. Fill large pot with coconut milk. Add rinsed rice. Add mango pieces.

2.) Bring rice and coconut milk to a boil and reduce to simmer. Add mango purée.

3.) Simmer while stirring occasionally to prevent clumping and to avoid burnt rice on the bottom of the pot. Simmer until it resembles an oatmeal like consistency. About 1-3hrs.

4.) Once it reaches an oatmeal consistency, add rock sugar and stir until it dissolves.

5.) Add cardamom to taste.

6.) Chill and serve!

[nvld-hedslife]

Gastroparesis Retro Tuna Noodle Casserole

Ingredients:

- One can of tuna packed in water

- Tablespoonish of Non fat Greek yogurt, or Hellman’s low-fat mayo (if you can tolerate) to taste

- Jarred or canned sliced button mushrooms however few or many you like

- Half cup to one cup of your favorite pasta shape (I like rotini for this, holds the tuna nicely)

- Parmesan or alternative to taste

- Salt and pepper to taste (if your canned tuna is packed in water with salt, you will most likely not need extra salt)

1. Make your pasta as normal. While pasta is cooking start on the rest of the recipe.

2. Drain the tuna of the water, and break up into small pieces with a fork.

3. Add your Greek yogurt or low-fat mayo to the tuna. Should end up being about a tablespoon, but do it to your personal taste. Combine until no white streaks.

4. Add the mushrooms slices and cheese to the tuna mixture.

5. Use tuna mix as topping for pasta.

Note:

If you want crunch in your tuna like most tuna salads, you can try adding diced onion instead of typical celery!

[nvld-hedslife]

La Brea

Props to NBC’s La Brea for having a disabled actor (Zara Gorecki) playing a disabled character and not making it her entire personality. That’s true inclusivity.

From the article below:

“To portray the character of Izzy as accurately as possible, series creator David Appelbaum would consult with Gorecki on set about how to properly showcase the experience of someone with limb-difference. ‘He would talk to me and go, 'Hey, is this what this experience is like?'" Gorecki says. "For him to come to me and actually ask me what being an amputee is like and adding that into the scene made such a difference.’”

La Brea Star Zyra Gorecki on Representing Fellow Amputees in Historic Series Regular Role

Actress Zyra Gorecki, whose foot was crushed by a log when she was 14, plays Izzy Harris in NBC's La Brea

[nvld-hedslife]

Hi. I hope you don't mind this ask but how do you know if you have both nvld and autism? I know I'm autistic but I'm questioning if I have nvld but I can't find any resources for adults or resources that talk about nvld and autism.

Ooh interesting. So for me, it was the reverse. I was diagnosed with NVLD first and then autism.

Tbh, I feel like for me, my NVLD is more like an “autism type”. Like how theres PDA autism and ADHD autism (idk what the proper term is but for people who present hyperactive inattentive type autism). Like for example, in the temple grandin movie (I know sorry. I hate to use her as an autism example but this one scene in the movie is the best example I can think of), she’s shown as thinking in pictures and being about to move things in her head (that one animation in the movie with the floating triangles). That’s one autism type; super visual/ imagery. I feel like NVLD is the opposite of that type because our visual spatial skills suck but we’re really good at things with words.

I can’t really think of any specific resources about having both, but they definitely have overlaps and can for sure co-occur.

For me, I was diagnosed with NVLD. And as time went on I’m like “hm is sensory issues a symptom of NVLD” and my doctor said no, same with stimming and repetitive behaviors and needing routines. And meltdowns. And I also have literally every symptom of NVLD as well, and usually it’s just some of the symptoms.

I guess another part of it would be when you started talking or reading as a baby. For example, with an autism diagnosis, doctors typically look for late speech (which is stupid, and we know that doesn’t accurately exclude someone from having an autism diagnosis). But with NVLD, there tends to be early or early-average acquisition of speech and reading, or hyperlexia. Many later diagnosed autistics started talking “on time” and for some reason a lot of doctors think you have to start talking late to be autistic. Anyway, my point is, if you started talking “late”, I would be inclined to say that it is likely not NVLD in addition to your autism. But that’s just my opinion. And I am not a doctor or professional.

Also, if you’re autistic, you most likely had a psych-ed evaluation at some point, and NVLD can be diagnosed based on that testing.

Hope this helps. And friends, please make corrections to anything I’ve said and add your personal experiences!

[autistic-demiboy]

I am hyperlexic and started reading early from what I can tell (surprised my mom completely by reading a sign before I even started kindergarten) and most likely taught myself. I am self diagnosed autistic and while I was assessed as I child I really don't trust it because I'm afab. A am pretty good with words but talking and writing are physically difficult because of motor skill issues, brain fog from other conditions, my schizoaffective disorder, and my other learning disabilities. My visual spatial skills aren't great and I have aphantasia(I hope I spelled that right, but I don't picture things in my head very well exactly how much I can see in my head varies a lot (don't know if it is connected or not). I also struggle with face blindness and have a really hard time understanding nonverbal signals. Thanks for responding.

[nvld-hedslife]

Yeah to me that sounds like NVLD- autism. I assume you’re also terrible at math? Shoe tying is almost always delayed in NVLD.

[nvld-hedslife]

Hi. I hope you don't mind this ask but how do you know if you have both nvld and autism? I know I'm autistic but I'm questioning if I have nvld but I can't find any resources for adults or resources that talk about nvld and autism.

Ooh interesting. So for me, it was the reverse. I was diagnosed with NVLD first and then autism.

Tbh, I feel like for me, my NVLD is more like an “autism type”. Like how theres PDA autism and ADHD autism (idk what the proper term is but for people who present hyperactive inattentive type autism). Like for example, in the temple grandin movie (I know sorry. I hate to use her as an autism example but this one scene in the movie is the best example I can think of), she’s shown as thinking in pictures and being about to move things in her head (that one animation in the movie with the floating triangles). That’s one autism type; super visual/ imagery. I feel like NVLD is the opposite of that type because our visual spatial skills suck but we’re really good at things with words.

I can’t really think of any specific resources about having both, but they definitely have overlaps and can for sure co-occur.

For me, I was diagnosed with NVLD. And as time went on I’m like “hm is sensory issues a symptom of NVLD” and my doctor said no, same with stimming and repetitive behaviors and needing routines. And meltdowns. And I also have literally every symptom of NVLD as well, and usually it’s just some of the symptoms.

I guess another part of it would be when you started talking or reading as a baby. For example, with an autism diagnosis, doctors typically look for late speech (which is stupid, and we know that doesn’t accurately exclude someone from having an autism diagnosis). But with NVLD, there tends to be early or early-average acquisition of speech and reading, or hyperlexia. Many later diagnosed autistics started talking “on time” and for some reason a lot of doctors think you have to start talking late to be autistic. Anyway, my point is, if you started talking “late”, I would be inclined to say that it is likely not NVLD in addition to your autism. But that’s just my opinion. And I am not a doctor or professional.

Also, if you’re autistic, you most likely had a psych-ed evaluation at some point, and NVLD can be diagnosed based on that testing.

Hope this helps. And friends, please make corrections to anything I’ve said and add your personal experiences!

[nvld-hedslife]

Hey other autistics!

My favorite book as a toddler/ baby was Pat the Bunny. Is this an autistic thing? Curious if y’all liked it too.

[nvld-hedslife]

I just did this volunteer woodworking thing and I had signed up with my deadname but asked them to call me by my chosen name and they did no questions asked! I didn’t have my service dog with me because shes still recovering from a minor surgery, so I brought my cane. They were amazing. They checked in with me periodically and respected when I said I was fine not the “are you sure you’re fine” bs. I dropouts my cane or knocked it over a couple times when it was leaning against and wall and people helped pick it up for me and were very nice about it. No one even asked why I used a cane. (The thing was run by senior white men). Ah it was so amazing and awesome.