PLEASE HELP! GoFundMe📌 Profile picture
#Disabled, #Autistic, Autigender she/her. MS in Ed/SpEd. Devoted to returning to ND education, after ableism/retaliation/various crises ♿️∞🌈 Want to #help?📌
10 Jun
Doctors should be tested/sworn in on things aside from “first do no harm.”

For example, if they believe that LEGITIMATE conditions “don’t exist,” or are found to be publicly espousing that POV? Fine/suspension/etc.

Financial consequences are the only way some people will learn.
This goes for nurses & other medical “professionals” participating on forums saying things like “EDS doesn’t exist.” My subluxating joints would disagree.

You worked hard to get your degree, & have a right to an opinion? Yeah, well I work hard to EXIST, & I have a right to LIVE.
I have the utmost respect for those that have been on the front lines during COVID (notice I’m not using the past tense...there’s still a pandemic).

But if you’re publicly invalidating & bashing patients - especially anonymously, like a coward - you’re not a *professional.*
Read 8 tweets
9 Jun
FYI, #ActuallyAutistic, #ADHD, #ADHDautism peeps...absolutely LOVE this Daily Planner app, & it’s rare that I ever feel that way.

It’s the first task app that I not only use, but feel *motivated* to use. The click & color change is so satisfying when I get something done🥰
I think what I also love is how customizable it is. I made labels that are more reflective of general times in relation to when I wake up (so I don’t feel shamed for not being an early morning person).

Was able to avoid color schemes I’m avoidant of, & nothing anxiety-inducing.
For me, it’s my task unicorn. I’ve been looking for the right one for ages! Only for repeating daily/weekly/monthly tasks tho. Still working on finding the right calendar/unique task-type app.

Recommendations? I’m trying TickTick, but mainly bc I can have my SD as wallpaper😅
Read 4 tweets
8 Jun
1 - Instacart order
2 - People that made the initial delivery with 12 errors
3 - Phone calls to Instacart (and 3 deliveries) to right things
4 - Total shoppers that were assigned to fixing the order over the course of the day
5 - Hours of waiting

And a partridge in a pear tree
Addendum: Second guy that oddly had me approve 3 replacements (only to refund 2, against my wishes) then left these outside of my house, unbagged, in the rain. Didn’t ring the bell, send a message, nothing.

I have a giant wheelchair ramp, & the door opens outwards. Seriously?? Paper towel 6-pack, paper plates, 3 Red Bull 4-packs, and 2
I tried this one (half) day, via chair. I was in a pain flare for 2 weeks.

But despite the pain & lack of accessibility, I did my few orders nicely. I’d never have made *12 mistakes,* or left stuff for someone like this, against accessibility instructions, in the rain🤷🏻‍♀️ Sheesh
Read 4 tweets
7 Jun
Something frustrating me right now:

I had the idea I needed, that would let me work in the field I love, have housing, & serve the community (particularly, neurodiverse & disabled kids).

Then a house disaster holding me up, & maybe ruining things completely. 1
But that’s not what gets me. Much worse is having to worry about doing things to make me “attractive enough to be listened to.”

It feels GROSS. Weight gain, slight ptosis, ratty glasses, & visibly missing teeth (until dental work is finished) mean I won’t be taken seriously. 2
It’s an awful feeling, & I’m also confused.

Do I work on teasing out my ideas, in hopes people will believe in me?

Do I focus on trying to LOOK like the expert & professional that I truly am - even though it’s exhausting, & goes against my beliefs...but might save me? UGH 3
Read 10 tweets
4 May
Anyone else think that a big issue with #parents thinking that food is “curing #autism” is the fact that it’s actually treating highly co-morbid #MCAS, and that people are just mistaking the behavioral impact on #MCAS as “an autism thing?”

#ActuallyAutistic #Neurodivergent
A TL;DR:
- It’s thought that 1 in 10 with #autism have #MCAS

- MCAS triggers can affect you systemically, & the chemical effects on your body cross the blood-brain barrier.

- Removing foods that have these chemical effects = less stress on the body, & the brain 1
- Less stress on the body & 🧠 (as this involves neurochemistry) causes less distress in general, so you see less of the signs of stress in that #autistic individual. You’re not “curing their autism.” 2
Read 10 tweets
4 May
So, only interested in #MBTI labels in terms of what they can help us learn about ourselves & others. (I can’t stand how they’re used in things like hiring decisions, some people having self-limiting beliefs, etc.)

That being said, who has helpful tips for an #INFP personality?
Particularly, I actually think I’d love tips on breaking past certain ways of operating, as an #INFP

I’m not going to be one of those that “comes up with the ideas, & passes them off to someone w/more power.” I have a history of seeing those w/power not listening to common sense
I think that the dreamers can be leaders. SHOULD be leaders.

People having positions of power only because they like the *feeling* of power - or bc they’re naturally charismatic, so people gravitate towards following them - it’s something that’s bothered me for a while.
Read 7 tweets
4 May
There’s def an unspoken feeling of a template for what an autistic creator/advocate (that actually gets heard) *looks like.* And yes, it’s racist.

White autistic creators need to stop trying to model “the autistic voice” after themselves to retain power. It’s dangerous & selfish
Like...have we not learned the fact that trying to profile what autism *looks like* led to a sexist profile, that’s left autistic women out in the cold for decades?

Are y’all *really* going to be part of a group of people that does this with race, too?
When there are white autistic creators out there engaging in racist platform-hogging, I’d love to know - so I can be sure I’m not following them.

Any white autistic that’s part of the autistic community at large should feel this way.
Read 8 tweets
2 May
.@d75council please read, share, donate to my 📌#GoFundMe if possible.

@NYCSchools needs to do better for the children of #District75

If @75District’s unwilling to listen & work w/me towards safety/curriculum/service reform, I’ll work to independently advise parents & teachers.
This includes letting you know of ways that students are being shortchanged in MANY ways, and how politics are involved in the classroom.
For instance, not making #communication devices available for cluster teachers, because the homeroom teacher doesn’t like them.

There are literally teachers ready to take away your child’s voice, in order to possibly cause another teacher to get a bad observation score #autism
Read 4 tweets
2 May
If you care about any of the following:

#Autism/#Autistic #education
#SpecialEducation
#SpecialNeeds education

Please check out the update clip/blog just added to my pinned #GoFundMe. *I don’t care if you’re unable to donate.* These are the kinds of things people need to know.
As someone that’s #ActuallyAutistic, I’m not seeking revenge. I’m seeking justice, & #equity for these students, & for myself.

This is the largest special education system in the country - and thus of great importance.
As I state in the blog/update just posted, I’d be willing to fight past trauma to effect change in a system that’s *this* large, and *this* important.

Give me my back pay, & acknowledge that days I missed were due to #inaccessibility, & lack of clarity re: OSHA workplace issues.
Read 10 tweets
2 May
I have to say this, and it’s very difficult.

I’m glad that people are listening, but the harmful #ABA abuses towards #autistic children *haven’t* been phased out.
Last year brought up a lot of flashbacks for me. I’ve seen children pinned to walls & floors.

They weren’t white.
The system I worked in operated at an awful intersection of #ableism & #racism

Teachers shouldn’t have flashbacks of these things. I was ostracized for speaking out
One person I witnessed doing this was an “#autism coach,” who, with her #ABA certificate, thought she was the be-all and end-all of autism.

This same coach that got snippy w/me for trying to help a sub INDIVIDUALIZE SCHEDULES, after SHE’D worked hard to make them nice & uniform
Read 5 tweets
2 May
If you’re a #teacher (or #parent), I needs help finding common hashtags helpful in connecting with those in #education. Specifically looking to reach out to those that work in #SpecialEducation & #SpecialNeeds education.

The system is failing students via failing the teachers.
The system is making good teachers sick via working themselves to the bone, being bullied for speaking out on #ChildSafety & other important issues, and parents don’t know.

This is also why so many fantastic teachers leave. (And we NEED fantastic teachers in #SpecialEd.)
The list of things that come *before* #student #learning are disgusting.

Things like “administrator bonuses, for getting good ratings on things that make #teachers break their backs,” come to mind.

The things I was told to “have in order” & spend my time on were APPALLING.
Read 5 tweets
1 May
.@POTUS, do you want to *truly* help all Americans? Here’s a great idea:

#Autistics are all too often unemployed, or underemployed- for reasons that are not their fault.

Start grant programs that will pay the tuition for #autistic teachers, therapists, & healthcare providers 1
Education & healthcare are extremely important, and autistics are often better understood by other autistics.

Studies have shown this. It’s referred to as #DoubleEmpathy. 2
Creating such a program would not only help to employ more #neurodiverse people, but it would also *allow for better services for ND students & patients,* because they’d have a better chance of being understood.

All while helping to #diversify the workforce.

Win-win, yes? 3
Read 5 tweets
1 May
Positive from a negative:
If you’re living #NEISvoid, #cfsme, or #LongCOVID life - and you have boty anxiety and a smart dog, #ServiceDog, #ESA, or #SDiT, here’s something that you can actually use as a way to benefit from a flare🙂
When I was stuck in bed with hardcore #LongCOVID flares, my SD could scent that I was sick, and would stay nearby...usually on the bed.

I’d luckily already had an “in case of bad days” setup to care for her, but I was often so sick I was only getting out of bed for the bathroom.
Being largely #poodle/just smart in general, she got used to the idea that “mom gets up, it means that she’s going to the bathroom.” And she would get up and go, often ahead of me, if not with me.

I DEFINITELY realized that this was a learning opportunity🙂
Read 5 tweets
1 May
.@TwitterA11y, people with disabilities need things to be accessible on BOTH ends.

The fact that the #AltText process is not easier on the writer’s end can make it difficult for #spoonie peeps & those with #cfsme to make posts that are accessible for the #VisuallyImpaired.
I know others are working on it, but with all of the algorithms out there, it should be possible to make viewable *predicted* text of what’s in a picture, so we can quickly approve it, or make edits.

That wouldn’t just “make life easier.” It’s about #accessibility & #autonomy.
#Disabled autonomy is more important than than many abled ppl realize.

So many things in our lives are based on the assumption that we “have someone to help us,” simply bc systems are falling short. It’s #ableist, & forces us to rely on others. We may not HAVE others available.
Read 5 tweets
1 May
People that have issues with #manipulation and #gaslighting, particularly my #ActuallyAutistic/ND peeps:
I HIGHLY recommend researching Game Theory. The free trial on The Great Courses is definitely worth it. If anyone can recommend good books/audiobooks, please mention below.
A big issue that I know I personally faced was being unaware of the idea that *not everyone uses the same type of points systems.*

Not being aware of this can make us extremely vulnerable to various abuses.
If your point system is for things like “personal freedom, honesty, integrity, helping others”...you can have a lot of issues if you encounter someone with a harmful point system of things like “control, manipulation, seeing others suffer.”
Read 10 tweets
30 Apr
Aww, crap...I screwed up.

Reminder for anyone ELSE in the northeast w/severe bug bite reactions...*mosquito season is open.*

If you’re fighting your body on getting those deliveries in, remember that getting them in before dusk/a potential bite is MUCH better.
#MCAS #NEISvoid
Of course this happened w/the big delivery (the only water I can drink, until I see if a reverse osmosis system works), when I had to use the hook to keep the door open.

I’ve been so busy thinking of setting up🦟 window netting that I forgot about safe times to open the door🤦🏼‍♀️
@DanDanNoodles78 “ISS SQUITOS”😩
Read 4 tweets
30 Apr
#NEISvoid, recently found out that Singulair is available in generic form...I had the familiar “it helps but I’m having untenable reactions to fillers” w/the original. Has anyone had issues with the original and found success w/a generic?
This was years ago, before #MCAS set in (especially hardcore). But I still had an issue with fillers.

I need to look up the brand/possible generics, but I REALLY wish I knew what the problematic filler was. Even if Singulair was a different brand, I often react to TEVA meds🧐
I wonder if they (TEVA) often contain something that has a high incidence of reactivity? I’ve seen several people with a TEVA issue. I’d really love to get to the root of it.
#ChronicIllness #Mystery🧐
Read 4 tweets
29 Apr
Ok, I’m TIGHT, y’all. This is why I have less and less patience for FB nonsense.

Saw a meme about how people should be FORCED to get the vaccine.

Asked if they ever heard of MCAS, CVID, or tons of other rare diseases, and sent them this.
cnn.com/2015/05/01/hea…
Meanwhile, the whole thread was them *complaining they wanted vacations.*

While #disabled people have the fear EXISTING, & about being stuffed back in our homes. Some of us have anaphylaxis to vaccines, &/or studies haven’t been done on how it affects our (auto)immune conditions
**Having a rare disease, a condition that causes anaphylaxis, an immune disorder, or #longCovid doesn’t make you an anti-vaxxer for wanting to wait for studies on the impact of the vaccine on your condition, or to find out what the fillers are, to get the right shot.**
Read 5 tweets
29 Apr
I managed to trim down my #GoFundMe, & feeling quite proud. I know it *still* needs to be shorter, but just dipping back into it for the first round of revisions will make next time easier.

I can’t wait to get to real #whistleblower mode.

#Trauma #Survivor #Noisemaker
FYI: #AutismMom, #AutismDad, #AutismParent - you should know what’s happening in your children’s schools.

This isn’t just an #autistic talking about #ABA.
This is an #autistic #teacher saying “I warned that a student would escape, bc I could see people were ignoring him for being hard to manage at times. No one listened to me, & he DID escape - NEARLY A FULL CITY AVENUE AWAY.”

Please help me in my mission:
gofund.me/e0bbface
Read 9 tweets
29 Apr
It’s both exhausting and frustrating to fight through trauma & health issues (driven by said trauma), only to not have access to help.

#DisabilityTwitter has been lovely about liking/sharing my fundraiser, but MANY of us have $ issues.
I thought fighting through this trauma, through so many other things that I haven’t mentioned, would be a huge step.

Yet I’m still being blocked by lack of access. The people I know IRL largely seem to have written me off, bc I “didn’t get better fast enough.” It’s soul-crushing
Not ONE person that I knew in my “abled” life has liked/shared/donated to my fundraiser this far - aside from an ex, & his friends. The rest were strangers.

The same people that had no problem taking part in my own past (sizable) generosity now act like I don’t exist. It HURTS.
Read 6 tweets
28 Apr
Frustrated. I’m chomping at the bit to get started w/certain things, but before I wrote up my fundraiser, I made a last-ditch effort to make money for the meds I need myself, by doing an Instacart shift. That was Sunday. I made less than $10/hour, & I’ve been in bed since.
Many nondisabled ppl don’t understand “bedbound” isn’t necessarily what they THINK it is, & that people with disabilities can perform whole jobs from bed, if they’re accessible.

But this is a different type of bedbound. It’s “I can barely move, overdid it 25 on a scale of 1-10”
For certain people that have trouble with their bodies adhering to a schedule, it’s a great opportunity. But for me? My body is crushed.
Read 5 tweets