So your kid’s autistic: A handy guide to not being a dick from a mom of an autistic teen daughter

slowlygettingouttamyhead:

1. Stop calling yourself an Autism Mom and making it all about you.
2. Meltdowns suck, but they’re harder on her than you. Work with her to figure out her triggers and don’t dismiss them.
3. Some types of behavioral therapy which focus on emotional regulation can be beneficial but anything that rigidly demands forced eye contact, forbids stimming, or aims to make her act “less autistic” is abusive.
4. Autism Speaks is garbage.
5. Vaccines don’t cause autism.
6. Focusing on causes and cures is both ableist and pointless.
7. Listen to and respect your kid as a valid human being.
8. Make whatever accommodations she needs to function optimally without making a big deal about it.
9. Be prepared to fight if school is unwilling to make accommodations.
10. Know your kid’s educational rights as a disabled person and make damn sure her school honors them
11. Don’t just rely on teachers and therapists to understand autism. Talk to actually autistic adults to gain a better sense of what to expect for your child’s future. Don’t know any? Follow blogs with the tag #actually autistic. And encourage your kid to do the same, especially as she gets older.
12. Your kid is capable of a lot more than you may think and she’s growing up. Stop infantilizing her and let her make mistakes.

Any and all constructive feedback from the #actuallyautistic community is welcome. I’m trying to continue to grow as a supportive parent.

edderkopper:

tinyeldritchmonster:

I’m having serious difficulties on how to be a polytheist with disabilities, how to make offerings and include the gods in my daily life with my disabilities and problems.
I don’t do much of anything lately after a relapse and even in my best moments I have a hard time with everything.
The only thing I do is e-shrines.
I don’t have many ideas or know what to do about it. It’s an important part of my life but I feel like I’m ignoring it because of lack of options.

A low-spoons activity for one person may be more difficult for another depending on their disability and circumstances, but here are some things that I’ve done and seen others suggest:

  • Offer water. As awesome as alcohol can be, water
    is still symbolic and necessary for life and all that.
  • Listen to
    devotional music, or just music you associate with your gods.
  • Research mythology or subjects associated with particular gods
  • Watch/read/play media featuring your gods, if it exists. Or just media with themes they’d appreciate.
  • Set an image related to your gods or faith as your phone or desktop background so you’re reminded whenever you look at it.
  • Consider
    dedicating a daily task you need to do anyway to a god, particularly something that you find
    difficult to accomplish or something that helps you change your life for
    the better: workouts, homework, cleaning, etc.Taking your medication could work too, if that applies.
  • Live by your gods’ values in everyday life.
  • Use apps like Stance, Resistbot, and 5calls to speak out about issues important to your beliefs with minimal effort and no human interaction required
  • Pray. It doesn’t have to
    be anything elaborate, or recited out loud. Even a quick prayer while
    doing something else will let the gods know they’re in your thoughts. If it helps, find or write prayers on a good day and just read them back on days that aren’t so good.

First Time Walking-Stick/Cane Users Tips

livebloggingmydescentintomadness:

whyistheworldlikethis:

I’ve seen a post about first time wheelchair users guide. Since I’ve been using a walking stick for a while now, I thought I’d make one specifically for these types of aids. These will be in no particular order– they’re just things you probably don’t know about using a walking stick.

– if you’ve hurt you left leg/ect., hold the stick in your right hand (if possible) and if you’ve hurt your right leg/ect., hold the stick in your left hand. Trust me, your shoulders and back will thank you

– the pad of your hand will hurt– it just will. You’ll get used to it and your hand will develop more protection there eventually. To start out, look into a pair of fingerless gloves. 

– a fold up/collapsable stick is good for beginners because you can take them on public transport/cars without too much hassle (they also fit nicely into desks and under chairs).

– When you’re using your stick, you only have one free hand. This may seem obvious, but it really impacts your every day life. Practice for a while around the house, so you get the feeling down.

-there are a lot of different types of walking sticks: fold up, one leg, two legs, three legs, etc. 

image
image

(these are only a few of the many designs)

-if possible, go to a shop that specifies in walking sticks. ask to try a few out, they will also help make sure that you’re using on that’s the right height for you.

– a height adjustable walking stick is a miracle, especially if you want to wear high heels to an event.

– you don’t need a prescription to get a stick in most regions (but in some cases they may help get a discount)

– getting a stick that is the right height for you if very important (even with an adjustable one). Too short, and you’ll hurt your shoulder. Too tall, and you can’t put weight on it properly. The correct height is when the highest part of the handle reaches your wrist when the stick is standing straight up, as shown in this image.

image

– if you’re young (under the age of 60) people will stare, often they wont mean to– it is annoying but you’ll get used to it. 

– again, if you’re young, people will ask why you’re using the stick, all. the. time. Even strangers will sometimes ask. You can use a really simple answer like “medical condition” and if they pry further, you can say “That’s all I’m comfortable saying”. If they don’t know you, or don’t know you well, they really have no business asking.

-Children will ask, a lot. Please be gentle with them, especially if they’re really little. I know it’s annoying but you can give children reallllllllly simple answers like “I just need it to help me walk” and most of the time they’ll be perfectly content with that and won’t ask more.

– don’t be afraid to use more advanced mobility aids if needed on bad days, or when readily available (eg. at a supermarket, when they have motorized wheelchairs for customers)

– You don’t have to use your stick every day for you to have a disability or for you to own a stick. Even if you need it once a week, once a month, you can still own one. You’re not less worthy or a mobility aid than those who need one everyday. 

-Use backpacks, the ones with 2 well-padded straps that go over your shoulders evenly. Use them as much as you can. Bags that you hold in one hand or have one strap make you unbalanced or take up your only free hand. 

– If you want to, decorate your stick, go all out. 

Even if you don’t need/use a walking stick, please reblog this to let those who do, know this information. 

I just want to reiterate that it really is okay for you to buy and use a cane even if you only use it once in a while! I was hesitant since I didn’t feel like I was “sick enough” to buy a cane, but on those days when I need it, it’s an enormous help. I was embarrassed to use it out in public at first, but you get over it. Me not falling is more important than people staring. 

And I wanted to suggest that you practice walking with your cane at home a bit before you use it in public, so you get the rhythm down before walking any significant distance. 

Also, if you really lean on your cane, do yourself a favor and get one with a padded handle. I also recommend the kind with a loop that goes over your wrist, because then you can momentarily let go to use your hand for something else without dropping the cane. It’s super convenient.

PS: If you were a fan of House M.D. like I was, remember that he deliberately used his cane the wrong way. He used his cane on the same side as his bad leg, and you’re not supposed to do that unless, for example, you’re going up/down some stairs and need to hold onto the railing with that hand. Don’t do that for any significant amount of time.

iopele:

thebibliosphere:

jambonsama:

stormingtheivory:

sizvideos:

Watch the video of this man giving away his software for free to help people with degenerative diseases communicate

but…. but…. profit motive! infinite houses!! this doesnt fit in my narrow victorian framework for understanding human nature!!

@thebibliosphere @vaspider

Oh. Oh dang. I know several people who this could help.

this genuinely makes me want to cry… I work with people who can’t communicate in traditional ways and this would help them soooooo much. I worked with a man who has since passed away, and he was fully paralyzed and ventilator-dependant so he couldn’t speak or sign, and we used an alphabet board where we’d speak the letters and he’d blink to spell out words… it was exhausting for everyone. he had a communication device like this one but it didn’t work even tho they’d spent–brave yourself–$11,000 out of pocket to buy it because the VA said it wasn’t “necessary medical equipment”… anyway, this program could’ve helped him so much and I wish it had been around a few years ago, but knowing it’s out there NOW is so awesome and if I ever meet someone like him again, I’ll know that there IS a way to help them communicate that won’t bankrupt them!

Hollywood’s Disfigured Villain Trope Does Major Harm to Disabled People

creativeronica:

palamate:

weneeddiversebooks:

The idea that to be beautiful means to be good and to be disfigured means to be evil is not new. It’s a really tired, unoriginal trend in the movie industry, and only perpetuates damaging beliefs about individuals with facial differences.

I know this is going to be dismissed as some fucking snowflake nonsense but I work in a paediatric burns unit and the effects of this trope are gut wrenching and so, so damaging.

Disfigurement and atypical physical features do not equal evil. Pass it on.

Hollywood’s Disfigured Villain Trope Does Major Harm to Disabled People

Chronic Pain Rehabilitation Programs: A Personal Perspective and Call for Spoonie Opinions

stomach-vs-heart:

Chronic Pain Rehabilitation Program: A Personal Perspective and Call for Spoonie Opinions Featured Image

Since moving to a state with one of the highest rates of opioid deaths, my new provider discontinued my Tramadol, a synthetic opiate I used for moderate to severe pain. He “wasn’t comfortable” writing the prescription I’d taken for 1.5 years without abuse. Referred to Cleveland Clinic for pain management, we made the four-hour trek with hopes of more specialized view about my pain and management…

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