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.
Feeling The Music With Deaf ‘America’s Got Talent’ Finalist Mandy Harvey
Sigyn has given me so much. Everything I struggle towards, claw my way forwards to get to, is because of her. I’ve never worked so hard in my life as I have since she called me, but every moment is sweetness and pain combined.
For her smile, for her approval
I will work until my fingers bleed
With a smile of true happiness on my faceI have found something worthwhile
And it’s a glimpse of a life I can have
She took my hand
The least I can do is not let go ♡
Voluspa Verse 35 – Sam Flegal
Interstitial cystitis affects between 700000 to 1 million Americans a year
Interstitial cystitis is a bladder and pelvic floor condition. It’s painful, exhausting, embarrassing, and complicated. It makes peeing painful. Makes sex painful. Even makes just sitting or laying down painful. You have frequent urination and utis, urinary retention, bladder spasms, and so many more horrible symptoms. I.C. patients are 90% women, 10% men.
Doctors can literally feel your pelvic muscles twitching and spasming all the time. Often the treatment is physical therapy where a therapist has to stick their fingers inside your vagina and press on the painful muscles until they release. The medicines prescribed for it are expensive and barely work.
Some women have it mild enough it barely affects their life once they make diet changes, for others nothing works and they have to insert catheters in them multiple times a day.
No one talks about interstitial cystitis. Many urologists don’t even know how to diagnose or treat it. I went to 4 urologists over 3 years and not one could diagnose it or spend more than 10 minutes on me. I was told to catheterize myself daily, to take pills constantly, I even was told that if I told my body to relax, it would fix my bladder spasms. Mind over matter. But it took a urogynocologist minutes to diagnose me by feeling the tense overly thickened muscles in my pelvic floor.
Even with a diagnosis, i.c. is still hard to live with and I struggle every day. Sex sets it into a flare. Not drinking enough sets it into a flare. Not peeing every three hours sets it into a flare. Sometimes nothing at all causes spasms and infections.
I just want people to be more aware how serious interstitial cystitis is in women’s health and to recognize the struggles we go through. I want doctors to be educated on the condition and take the scared women in pain that go to them for help. I want people to not be afraid to talk about it even though it involves “bathroom stuff.” It’s something many women suffer from and we need to treat them better.
Not sure if this is useful to anyone, but I had a big breakthroughs in my idea of self-care recently when I applied a phrase I use to combat negative self-talk – “Would you talk to a close friend that way?” – and reframed it as: “Would you care for a friend that way?”
Imagine my friend came to visit and she got hungry. Would I say, “Wait five hours until I’m done with this project and then you can eat a granola bar?” No, I would not. Would I say, “I’m don’t have time to go grocery shopping for you, so why don’t you spend three days straight eating this years-old Ramen I found in the basement that one of my old roommates left behind?” No, I would not. If her clothes got dirty, would I say, “I’m too lazy to scrounge up some quarters so why don’t you wear these ill-fitting clothes from Goodwill with holes in them?” No, I would not. If she had a day off, would I say, “I can’t be bothered to find something good for you to do; why don’t you just sit on the couch reading depressing internet articles all day?” No I would not. And if I were at a party, and she was tired and feeling uncomfortable and wanted to go home, would I say, “Stop being such an awkward loser, stay here and smile at people so they don’t think you’re rude?” No, I would not. A person I treated that way would be justified in wondering if she was my friend at all.
But, needless to say, I treat myself that way all the time. Once my friend has all her basic needs taken care of, sure, we can go for manicures and massages after. But that’s not the point. The point is making sure she’s fed and washed and clothed and comfortable; and I don’t think I’m the only one who has a whole lot of trouble even getting to that point.
pretentious illiterate (that’s their username, not an insult) on Metafilter (via gazztron)
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.
Holding the Bowl 