Pink, No Sprinkles

Hello everyone, I started a fundraiser on GoFundMe and would appreciate your support. Every single share and donation makes a difference and helps me get closer to my goal.

I'm trying to raise 3 months of the Freestyle Libre 3 plus CGM. My pharmacist quoted me $250 for the entire kit a month, which is $750, and I'm raising $800 for any unforseen fees.

For over 12 years, my son and I created the Pumpkin Bucket Project, filling Halloween buckets with non food items for disabled kids that didn't always participate in Halloween like their friends. It was fun and the kids loved it. Then my son graduated and we stopped. But I kept feeling a pull to do something similar.

Recently we participated in a graduate research project trying to create a standardized cart for autistic adults and children that would be used in emergency rooms across the state.

That sparked an idea of making something like that, but smaller for police and eventually firefighters to carry in their vehicles to help calm and de-escalate medical crisis and other emergency situations.

I would like to make First Responder Autistic Calming Kits, or FRACK bags.

Each one would hopefully go into a police vehicle, and then during medical crisis or emergency situations, the cops could pull this out to help autistic adults and children calm themselves to de-escalate tensions.

I've created a wishlist, and each item has a small explanation for why I included it.

I would really appreciate any help completing the list, and at donation will include everyone's names that made it possible.

I think this will replace our Sensory Pumpkin Buckets, and once a year we'll make ten of these and donate them to the local PDs around us to make our disabled population, adult and children, safer.

If you would like to help, I'm including the link. There's no obligation. I'm just hoping to make our families a little bit safer as we learn more.

I think you should wear the brace, take the nap, ask for help, accept help joyfully, I think you should use the cane, the chair, you should sit down

I think you should put a cool or warm or one then the other cloth wet and clean against your face and focus on the temperature and if things align to allow it the aroma, and if not, then the cloth, I think you should focus on the weight, the texture,

again

the tempreture

to help

you relax.

I think you should take the ibuprofen. The asprin. The thing that works, for you, when you have this pain, that is available, handy, in your purse, in my purse, in someone's bag, in your bag, in my bag, we hand it to you, fetch you water. You thank me, them, yourself, for the water and manners are lovely and your appreciation is felt even if you do not thank them because

right now

talking is

the

last

thing.

I think you should buy the pre-cut pre-cooked just reheat just warm up just eat as is just sorted and I think you should remove the word "just" from these sentences you say to yourself as this is vitamins and minerals and carbohydrates and proteins and fats and the mechanics of being feeding your body and I think if you can adjust it to make it tastier than you should

salt butter cheese chocolate little snips to help

I think you should understand that most things in this world are neutral. Embracing neutral aids are good, so, neutral positive.

I think you should accept the weight of your feelings and scribble and draw and yell and sing and cry and howl and then sit and rest and watch a movie or listen to a song or read a book or read a blog or read a story and allow the cold comfort of the anger and angst

and think the weight of the unfair and cruel burning in you powering the furnace should be allowed a winter's night's chill

and then allowed to quiet as the sun rises again

funny, that, the sun, it rises on days of horror and days of sublime

i think you should wear the brace, actually, because your wrist hurts, and it is a brace, it is metal and fabric and velcro so some kind of plastic

it is not a crime, that you got away with, that haunts your steps, will they catch you, wearing the brace, you've lived twenty years since needing a brace, you're sure to be caught now, sheriff on your heels, the law just around the corner, everything bound to be ruined, soon as they find out

i think you should wear the brace because it is a brace and it will lessen the pain and you are in pain

and

justification is not needed

this is reason

alone

i think i should say that again

justification

is not needed

this is reason

and it alone

is more than enough

i think you should wear the comfortable clothes and you should wrap tight the comfortable blanket and open the windows to let in the comfortable air and i think that you should take a measuring cup and figure out if a few hours of sleep or gaming or reading or art or just being alive quietly would help you and if it does then dip the cup into the pool of time and i think you should drink it, allow it to settle, and experience it

i think you should experience softness

as often

as possible

i think if the pre-sliced single orange costs as much as the bag of oranges but the pre-sliced single orange allows you to dig your teeth into this freshness, this preserved sunshine

then the monetary cost is the cheapest price on this earth

i think you should wear the brace

and embrace the neutrality of things

i think you should be comfortable

i hope you are comfortable

i hope as i pass i can run a single finger along the length of your arm to remind you i hope you are comfortable

and

that

i am here,

for you,

“No.”

And this kid rolls his eyes because DUH and he says “Why not?” all cranky-styles, so I said

“Because you don’t need to go to the bathroom, you’re bored and you need to move. If you need to move, tell me and I’ll let you know if we’re at a part of the test where we can pause. Like, for example, we can pause right now if you wanna race me around the building.”

Dolls who are disabled + use service aids!

Several decades later my sister had an MRI, as a long shot, to try to figure out why she was sick and deteriorating with a number of symptoms that were close to being written off as anxiety. She was sent straight to the hospital for adult onset hydrocephaly. Two days later she had brain surgery to put a shunt down her neck into her stomach and drain the fluid out. (No, you cannot usually get brain surgery that fast. Yes, it was that urgent.) Recovery was long and squiggly but it happened.

I think of that boy every once in a while. The one who died. I have no doubt that treatments developed for people like him, and tested on people like him, saved my sister's life.

I've been type 1 diabetic since I was about one and a half, and was incredibly sick. If my mother hadn't also been type 1 and recognized the signs I likely would have died.

I was born in 1982. Insulin was first given to a patient in 1922, and he survived. Before that, type 1 meant death, often very slow and agonizing. Before insulin, doctors advised a super strict "keto" diet to prolong life, and it could work for awhile - up to a year, I believe. But it was a miserable existence as the body was literally eating itself as the blood turned acidic until the patient eventually died.

60 years. Only 60 years before my birth did that procedure work for the first time. That's absolutely nothing given the span of human history and I think a lot about the people who died from it throughout time.

But yes, people tried. Healers and doctors of all sorts tried all manner of things to allow these (mostly!) kids to live. The fact that it was accomplished at all is nothing short of a miracle. The fact that I've been alive 42 years is fucking insane considering my body doesn't produce a hormone necessary for survival. If you think that doesn't blow me away on a regular basis you have another think coming. It's nothing short of a miracle.

Every medical advancement is. The amount of work that goes into it and the vast amount of luck necessary to get it right even when all the research and information is sound is just astonishing.

With Trnmp getting into office, the raids will expand.

I want you to remember the phrase, "La Migra!" When you see ICE officers or their vehicles entering an area, yell that phrase as loud as you can.

La Migra is a Spanish slang term for immigration enforcement and border patrol officials in the United States. If you yell, "La Migra," people will understand to exit and flee the area.

Trump will say something like "You know the Hispanics actually punch kittens, it's what they do."

And the news will be like "TRUMP SAID HISPANIC PEOPLE PUNCH KITTENS" for three weeks.

And while they're doing that the Republicans in Congress have quietly deleted healthcare.

Their inability to do some things (like work, for example) does not mean they should be judged for… idk hanging out with their friends or to going outside. After all, having interests outside of work is often essential to our mental and physical health OUTSIDE of our disability.

And also *you might want to sit down for this* disabled people know what’s disabling for them (unless they people-please or push through due to necessity or survival of some sort). Disabilities don’t have to be visible or persistent to be disabling.