Jasper

Yes ! Sorry is so long !

important to remember is probably different depending on where person lives . Pixie only know about Washington state in U.S.A. .

simple answer : caregivers do what person wants only and not can go against persons decisions . Guardians do what person needs and have legal authority to go against some of persons choices , but guardians are required to make choices in the person's best interest and not just arbitrary choices or just what's easier for the guardian .

Long answer :

my instagram post for AAC awareness month!

I'm not so much interested in dementia patients as dispensers of profound life advice, nor in the family love and grief surrounding them (though I have every sympathy for it and I know it is immensely hard). I'm interested in dementia patients as a marginalised population. Often medically neglected, often institutionally abused. Frequently dismissed and trampled on at every level. It's ableism, against a population almost definitionally unable to fight it.

Providing care for people who can't understand it and don't want it is complicated and ugly. I don't have big solutions and I'm failing to sketch out even the vaguest shape of the huge problems. But at least I can take one tiny stance for how I interact during the time I have with them: that they are people, deserving of respectful engagement in both being spoken to and being listened to.

People with dementia are worth talking to, even when they won't remember afterwards that you ignored them.

People with dementia are worth talking to, even when they can only follow a couple words at a time. Sometimes they surprise you and you get a funny or touching anecdote out of it, but far more often they do not; the mundane times are still worthwhile.

People with dementia are worth talking to, even when they talk in one unending sentence at 500 words a minute looping around the same three phrases because they don't remember when their sentence began.

People with dementia are worth talking to, even when they never talk at all.

People with dementia are worth talking to, even when they are in pain. Distressed. Angry. Crying. Shouting. Screaming. Violent.

Nobody should be obliged to suffer the violence, but neither should the person be obliged to suffer their own distress alone forever. There's a tension there! There isn't an easy answer! Both things are true and it's exhausting and hard and painful and loud and still we must wrestle with it, we must not write them off. Often they are trying to communicate their pain, though often their pain cannot be solved.

People with dementia are worth talking to. They are the same people as ever they were - they haven't died, they aren't lost or hidden. There is a continuous thread from the past to now.

prior to this, he was non-violent, quiet, walking around, saying hi to other patients. he said hi to me. i heard the nurses saying he had been found under an overpass the previous night, confused. i never saw him again. for the next nine days i spent in the hospital, i was terrified of that happening to me, too.

My mom lost her job and even though she got a small severance package, it isn't enough to last her until retirement, in 18 months. She asked if she could take over the shop, and of course!!! I want to help however I can, so with that said, preorders are open! August 8th 2025 is when we will be buying the supplies, and it will take about a week to get those in, and a week to make any preorders before they ship out, altogether about two weeks!

My car also desperately needs a new water pump because it is leaking coolant like crazy, and that will cost about $2800 - due to how our engine is laid out, it will require the whole front end of the car to be taken apart.

This preorder sale will both help take care of my parents and also get my car fixed.

Shop Link

That woman never gendered me right once, but she shut up about Jesus long enough to feed people next to us bc she cared more about action than ideology. She also had a whole network of other church people who helped contribute $ to ingredients. We provided more and better meals together than in our "correct" silos

by Gayle Brandeis

"The average pediatric wheelchair can cost thousands of dollars. And when children grow and their needs evolve — or a wheelchair gets damaged — those costs multiply.

So, the team at MakeGood NOLA, a New Orleans-based adaptive design lab, has made something that can transform the world for disabled children.

“Introducing the world’s first fully 3D-printed wheelchair,” MakeGood founder and president Noam Platt started a recent social media video.

He wheels a small, almost toy-like lime-green wheelchair into the frame, complete with a matching harness, suitable for children ages 2 to 8.

“Everything from the body, to the wheels, to the tires, the seat, and even the straps, all were 3D printed on a regular Bambu Labs A1 machine,” Platt continued.

This means the design is fully compatible with a regular 3D printer anyone can have in their home.

“We designed this to be modular and easy to make,” Platt continued. “Really, anyone with a 3D printer and some filament can download the files and print it.” [Note: You can also use 3D printers for free or a small cost at some public libraries and maker spaces, opening up accessibility even further.]

Once the prototype is completely finished, it will be available as a fair-use download that anyone can use for free.

Pictured: The new 3D-printed chair by MakeGood. Photo courtesy of MakeGood NOLA

Platt said that because it has a modular design, the wheelchair can be put together without any tools or glue. And if any part of it breaks or is damaged, users can simply re-print the single piece they need.

“As a wheelchair user I love everything about this,” TikTok user @thisisharlie commented on Platt’s video debuting the wheelchair.

“Mine costs more than my car, I can’t imagine having to buy a new one every year or two as they outgrow it,” @thisisharlie continued. “You’re going to change the world.”

For Platt, that’s always been the plan.

When he created MakeGood in 2021, the nonprofit design lab was thinking of the more than 1 billion people around the globe who live with disabilities.

“Since traditional design often overlooks diverse bodies and minds, it is crucial to reshape the built environment,” MakeGood shares on its website. “The challenges our communities face — both physical and social — are solvable.”

MakeGood works with individuals to co-create their adaptive design solutions, centering the “Need Knower,” the disabled person or their primary caregivers, throughout the entire process.

Since the founding of MakeGood, 1,600 individualized adaptive devices have been delivered to families for free. Platt’s team found a niche with this wheelchair, which they call the Toddler Mobility Trainer, or TMT. 

On its website, the organization says the wheelchairs were “designed with therapists from all over the world” and offer “unmatched mobility and independence to young kids.”

Children and parents agree.

“It’s an A+,” one parent said of an earlier prototype of the TMT in a report by CBS News. “It’s helped [my son] become more mobile and be able to adapt into the other things that he’s going to be offered. It’s helped his development.”

At the start of the design process, Platt reached out to area hospitals to see if he could fill a need.

“Part of it is empowering clinicians that we can go beyond what is commercially available,” Platt told CBS News. “We can really create almost anything.”

Now in the final stages of tweaking the TMT design to be ready for release, Platt is eager to get the wheelchair rolled out and into the homes of the children who need them most.

Pictured: A rendering of the 3D printed design, which will soon be available for download. Photo courtesy of MakeGood NOLA

“We think this sort of 3D printing and design is going to be huge for accessibility, and for wheelchairs specifically,” Platt said in his social media video. 

In the meantime, people can request a free chair from MakeGood.

“We have a growing list of people who’ve requested these, and once we finish the design, we’ll start filling those requests with custom-printed chairs, including things that you might need for your particular chair,” Platt said in a follow-up video.

Because the chairs are easily 3D printed, they can come in any color and can be modified to include other accommodations, like a section to hold a breathing device or other aid. With years of customization and design experience under his belt, this new innovation is simply an extension of Platt’s dedication to inclusive design.

In 2023, Platt told New Mobility: “I feel like every time I deliver one of these [assistive] devices, I get a hopeful feeling that the world has been changed a little bit for the better for the next generation.”"

I know it's always because they haven't spent time around or time listening to people who have severe or extreme sensory issues,

so think theirs is the worst of the worst,

Yes, i want to give some people some ideas of how extreme meltdowns can look:

People have clawed their eyes out in meltdowns, broken bones, died, bled out, jumped of cliffs or down stairs exteria.

More common things are head banging and giving themselves a concussion, ripping out chunks of hair causing bald spots, biting themselves and others, hitting themselves and others causing bruising and many more things

People who have extreme meltdowns most likely have had police and/or ambulance called on them (often by their family and caregivers) in meltdowns atleast once, but for many its too many times to count

People often need to be restrained by two, three, four, five and more people during meltdowns, sometimes for hours, often people are sedated, often people are put in restraints like handcuffs aswell. These measures are often taken when the other alternative is death.

These meltdowns often last for hours, 15-30 minutes is considered short for many, a lot of people with extreme meltdowns cant self regulate, for some this means they rely on others to regulate them in specific ways, or a specific person, or they just cannot regulate themselves so will have the meltdown until they fall asleep or collapse from pure exaughtion, or until someone sedateds them

And yes, sometimes these meltdowns include screaming and hysterically crying and thats part of what makes it extreme, there is people who cry so much they vomit multiple times, every meltdown, and have these meltdowns every day, there is people who are literally malnourished just because they vomit so regularly and so much in meltdowns.

There are people who have sedatives ready for meltdowns in their house, or who are sedated when doing things that trigger meltdowns (like baths) just to avoid a meltdown, there's people who are hospitalised for days, months, years! On end just because of their meltdowns, there is people who have specific padded rooms in their house for meltdowns, there is people who cannot be without 1,2,3etc people 24/7 who are ready to restrain them in meltdowns

let teens / adults bring plushies in public