Tag Archives: changetheworld

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Body Autonomy vs. Vaccinations

If your kid has a hard time with getting a shot, how do you square that with teaching them body autonomy?

What we’ve done is focused on your autonomy ends where another body begins.

If you need to spin around with your arms out – that’s fine. But you have to do it where you have space to not whack into someone else, because then you’re not respecting their body.

Vaccines might be trickier to understand for kids. But your right to go out in public and spread germs and avoid a shot ends where infants, old people, immuno-compromised and allergic folks are risking death because you couldn’t tolerate getting a shot.

It’s totally fine to cry and say you hate getting shots. It’s fine to ask for help with your anxiety. It’s not fine to just avoid it.

Here’s some of the things we’ve tried:

As an infant, nursing during or immediately after to soothe.

Spreading out the shots so there were no more than 2 per appointment even if that meant going back in two weeks for an extra appointment.

Having the kid sit on a lap and get squeezy hugs.

Using a blindfold or hat pulled down over the eyes so they couldn’t see.

Breathing practice.

Reading books about it or social stories.

Playing pretend of it (practicing what will happen & what we’ll do). You can try to get really accurate using a cold wet wipe on the arm and something to gently poke with like a pen or knitting needle.

Getting our own shot beforehand so they could see what happens.

Listening to music.

Using Buzzy Bee

Wearing a tank top so they don’t have to feel their sleeve being pulled up.

Having the nurse/doctor show them the needle (what you imagine is often scarier than reality). “Oh, that’s really small.”

Bringing our own preferred bandages.

Treats afterwards to celebrate their bravery and good dead.

Agreeing to pamper them for a couple days after while their arm is sore.

Talk about how they’re literally being a hero and saving lives.

Listening and validation their feelings about getting shots. (It’s scary, it hurts, I’m mad that I have to do it, I’m frustrated & disappointed they haven’t made nasal sprays for everything already. It’s annoying that it keeps hurting.)

Getting anxiety treatment/therapy.

Brushing protocol with an occupatinal therapist to help reduce sensory sensitivity.

This was what we tried and I’m sure there are other strategies out there as well. Just continuing to try to improve the experience and listening to your kid is a good way to reinforce that you’re trying to respect their body as much as possible – without risking other people’s lives.

We also talked about how in extremes, not respecting other people’s autonomy will result in losing ours. For example, adults who commit assault go to jail and lose their autonomy & freedom.

Even if getting a shot is super painful and we get miserably sick for a week every time – those are still temporary. Death is not. And while most often you don’t know who you’ve killed with your germs and you can live in ignorant bliss, sometimes you do – a baby cousin, a beloved grandparent. And you can’t undo what you did, you would just have to live with the regret.

A really informative video about vaccines and the (lack of) risk.

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The Hidden Epidemic

It’s estimated that childhood sexual abuse (CSA) affects 1 in 5 children ages 0-17.

Which means 1 in 5 adults is a survivor of CSA.

CSA is traumatic even if you don’t remember it.

And anyone thinking 0 year old babies aren’t at risk – we know I was assualted by a grandparent when I was 1 something. We don’t know if that’s when it started or just when I was able to verbalize it.

Why am I telling you this?

Because prevention is the cure. And to prevent the problem you have to be aware of it. And if no one talks about it, how can anyone be aware?

Also – it was NOT MY FAULT. And I have NOTHING to be ashamed of.

And neither do you. It’s ok to cry. Better to process the grief than to turn it inward or lash outward.

Ok, so now what? If you’re a survivor – get trauma treatment. Regular therapy most likely won’t help.

If you’re a parent – educate yourself and your kids about consent, body autonomy, tricky people and bad secrets.

Stranger danger isn’t a thing. Strangers are EMTs and store clerks and firefighters who you’ll rarely interact with and will usually be perfectly safe doing so, possibly even life saving.

Tricky people who don’t respect body autonomy and ask kids to keep bad secrets are the dangers. And they’re usually (around 90% of the time) family or friends or other people who aren’t strangers – like some priests and coaches. Just like most kidnappings and Amber Alerts are due to non-custodial parents taking the kid(s), not strangers.

Resources:

Books for adults about trauma:

Books for kids I own:

Books I plan to look into:

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Relationships

Things I wish I’d known earlier in life:

Here’s one from the School of Life relationship playlist I especially like:

Quite a few of the School of Life videos reference ideas that come from the Gottman research. While I tried to apply the Gottman research to my relationships, I now realize that my unaddressed cPTSD/attachment trauma was getting in the way.

School of Life relationship playlist:

Patrick Teahan on relationships:

Crappy Childhood Fairy on relationships:

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Ehlers Danlos & Neurodiversity Research

I’m so excited, a friend of a friend just shared all this:

Dr. Eccles specific research areas are Neuroscience, Psychiatric and neurodevelopmental features of connective tissue disorders, Mechanisms of chronic pain and fatigue.

The quickest way to see a summary of all her 67 published medical research with active links to each is here: https://www.researchgate.net/profile/Jessica-Eccles-3

Some titles of pubs just within the last 2 years:

  • Towards a Neurodiversity-Affirmative Approach for an Over-Represented and Under-Recognised Population: Autistic Adults in Outpatient Psychiatry
  • Joint Hypermobility Links Neurodivergence to Dysautonomia and Pain
  • Variant connective tissue (joint hypermobility) and dysautonomia are associated with multimorbidity at the intersection between physical and psychological health
  • Connecting brain and body: Transdiagnostic relevance of connective tissue variants to neuropsychiatric symptom expression

You Tube Videos:

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CalFresh

Info Dump mess – I want to come back and split this out to three different things:

  • CalFresh help since clearly there is a bunch of stuff available I found this time that I didn’t last time
  • Yelling at people who need it (I love Penelope Trunk, she yells at the world with her blog and you can pay her for coaching if you want her to yell at you privately, or take her classes if you want her to yell at others while you quietly think about how you needed to hear that – if you have a trauma background, you either are still avoiding being yelled at (read her blog so you can pretend she’s yelling at other people until you can’t resist commenting or taking a class or coaching session), you need to be yelled at but still hate it, or you recognize how helpful it is an love it.

    Oh, Penelope, that’s why we love you even if you think we hate being yelled at.
  • whatever other journal junk I need to clean out of this for those two

Stub

It took three tries requesting a call back on CalWin.

The most important thing I’ve learned recently is to say this:

I’m autistic and I KNOW my questions seem really stupid. I just need your help please.

I couldn’t say that without crying because it sucks to know how smart I CAN be and how stupid I WAS being because I couldn’t function at the moment they called and I knew I HAD to take the call.

I had to pull out a calculator and a blank document on my computer and do the math before they could answer my questions and then I cried again in relief that the solution was so easy.

The math:

If you are disabled and only get SSDI (see note below about cash help)

Then:

SSDI Amount
– Rent (LEASE amount)
– Utility exception of $500+
= Your income

If your income is 0 or negative, then you qualify for the maximum CalFresh benefit.

I had to ask the person three times and say that I was sending cash monthly and had a document in writing to the rental company promising to send the cash amount monthly before I believed them:

IF YOUR FAMILY IS GIVING YOU MONEY and you don’t live with them – THAT IS NOT UNEARNED INCOME.

Your rent is what your LEASE says the person ON THE LEASE owes, not how much of it you pay AFTER any help you receive. Yes, tell them about the help if you are doing the phone interview – so they can reassure you it doesn’t matter.

NO – DO NOT DO ANY MATH for them.

YOU DON’T KNOW THE EQUATIONS.

Or you got someone that sucked at asking questions. More likely, if you’re autistic, have an autistic relative, or think you’re smarter than the person you’re talking to – either you’re not or you’re a jerk.

Being stupid, admitting it and then thanking the person afterwards is better than being a jerk.

I thanked the person very specifically and heard a laugh of pleased surprise.

I know what that laugh sounds like, because I’ve heard it and I’ve made it enough times.

I said something along the lines that I recognized that the job sucked and didn’t pay enough and that they were doing it anyway to help people and to please keep doing it until they found a better way to help people.

Anxiety will lie to you that you can’t trust anyone. If you grew up with trauma, then you will have anxiety because that’s how you survived the trauma of your childhood.

The way you recover is that you figure out that humans are all trying the best they can to survive, and if they have anything left, then they start to thrive.

The way you thrive is to connect. And to connect you find people you want to listen to, or who want to listen to you.

You only need one mutual friend. You can be a friend to someone who needs you as a friend, and you can have friends that you need that don’t need you back. There are so many kinds of friends.

If you journal privately, you’re managing your anxiety.

If you write publicly, then you are sharing your truth just in case it helps ONE other person. So the things you’ve learned and experienced can help someone else the way you wish you had been helped.

Authors are telling the stories they need to tell. Popular authors are telling stories that many people wanted or needed to hear.

The internet has made it so we can tell our stories so many different ways so that any human can find the story they need.

I found the story of the worst of humanity and that I can see and understand the worst thing a human can do and forgive it – because that is how much they suffered and are suffering.

I understand why Nonviolent Communication is the name that author chose. And I understand why people call it NVC because they want to help people who need to learn to communicate, but are too far from pain and trauma to understand it, or too close to tolerate it.

I’m so glad that people exist that can’t even imagine existence being so painful that you don’t want to exist anymore. I was shocked to learn that my father-in-law is one of those people.

Either you understand suicidal ideation, or you don’t.

I don’t know if my husband does. I know I do and I feel sorrow because I think my child does too. I do know my father in law doesn’t. He was so confused when I asked him if he had ever WANTED to die. Like, couldn’t even imagine understanding why any human would want that level of confused.

These people are working for crap pay dealing with us at our worst because they either want to or are willing to help. If you think you’re smart, then recognize that they are the experts here and you need to trust them

You’re not being honest or helpful by “doing the math” for them, you’re giving them the wrong numbers.

Don’t bother trying to call and wait – they have a 500+ backlog as of today and every time I tried to call and wait I was 40+ in the queue and never got to a human before the call dropped after 2+ hours on hold.

Go on CalWin, request a call back on Monday, if you don’t get one or miss the call, request it again the following Monday.

Right now the state has been sending emergency aid and you might have more on your EBT card than you realize, just go try to use it or:

CalFresh EBT Balance and Login – California Food Stamps Help (icaliforniafoodstamps.com)

If you can’t find your card – report it as lost: EBT Card

People are trying to help. And the more ways we try to help, the more people we will help.

When I was functioning, I didn’t find this site, but I did look all this up on my own, so I knew my family member qualified for the maximum and was getting only 1/10th of that amount.

We got a person at some point, and they pointed us at the form to fill out and upload on CalWin so that I can talk on behalf of my family member without them having to be present to give permission each time. You can give any adult you trust permission to apply for you.

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Focus of Attention

Focus is a skill.

Focus is how we direct our attention*

Attention is the process by which we make observations.

Observations are the process by which one question is answered and another is identified.

I choose to focus internally to be ready to focus externally. This is self regulation.

Dec. 17 2022 log:

*Attention is the most valuable thing anyone can possess.

More valuable than time, money, power and perhaps even love – depending on your definition of love.

The ability to control our attention is the most powerful ability any human has. And perhaps that’s the defining trait of humans. Free will – the ability to choose what to pay attention to and when.

My knowledge of Christianity suggests that at least one religion agrees with that assumption.

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Systems

For a system to work, it must be used.

I choose to use it.

To use it I need to be able to focus.

If the system feels restrictive, that is an error log: initiate debug process. The system needs to be more flexible.

If the system fails, then it needs to be more robust.

July 28 2024 log: System log, didn’t do music in massage chair at 830. Need to start Sunday weekly journal review at 7p. Added new weekly Habitica task, updated daily journal review task with reminders, added end of day processing task.

July 23 2024 log: Error: I didn’t check my Habitica to do list in the morning and missed a time sensitive item. Correction: I added a daily with a timed reminder in Habitica to check that to do list. I haven’t been processing things off that to do list at the end of the day. I should also print out a list for the bathroom to reinforce the morning routine.

I’m getting more consistent at listening to music with headphones while sitting in the massage chair and processing my Habitica dailies and drinking my protein shake after taking my meds.

I should add another round music/massage/process around 8:45pm. I added that to Habitica as a daily with a timed reminder.

Dec. 18 2022 logs:

10am Ask what’s next? If I don’t remember, it is logged. Where? I remember that it is logged in Habitica or the Calendar. Habitica is more flexible, the calendar is time restricted. The calendar is for sharing information and coordinating with others. I’m not ready to connect with others until I have connected with myself.

11am I didn’t stick to the system. Why?

It’s not robust enough. Why? I didn’t document errors. Why? I got distracted. Why? I failed to focus.

Dec 17 2022 Log:

Stub – add definition

A process.

A supportive framework.

A series of actions.

Support.

Systems help reduce the energy cost to achieve a specific outcome or output.

I am building a system to help me human (verb – the act of being an aware, focused, intentional being). I did not learn during my first 5 years, so I need much more support. I am trying to build a robust system with error logging. This way someone else can see the problems and work to correct them, without having to spend time re-discovering them.

I trust that someone exists or will exist who can and will take this further than I am able.

  • Communication systems
  • Cat care system
    • Cat feeding system
      • metal or ceramic reusable bowls or sustainable one time use compostable plates
        • plastic can lead to chin acne
  • Device charging system
    • Frequently used locations get extra chargers
      • label chargers so they don’t get removed
      • include system reference on the label? Or wait to see if labels fail? Prevention vs Cure – Prevention, answer is yes to include
    • Mobile charging options
      • carried
      • stored in transport
    • Charging schedules
      • factors – solar generation, time of use cost
  • Pain prevention (self-care) system
    • Pain is behavior of parts of the body
    • behavior is communication
    • unmet needs are being communicated
    • next step is to understand and meet the need
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Culture, Society & Constructs

Stub below from Dec 17

Culture definition

Society definition

They are constructed systems put in place by humans and human animals trying to work together.

Stub below from Dec 16, 2022

Social model of disability – social structure – social constructs – social system – to be disabled means that the system is failing and could be improved. The system is blocking or removing your ability to get your needs met.

The first step is knowing what your needs are.

The second is knowing how to ask for what you need.

The third is being able to keep asking until you get what you need. Preferably in either a different way or of a different person each time.

The way to do this while reducing the need for fortitude (grit, perseverance, persistence) is to use the scientific method.

If you document your needs, what you did to try to get them met and the results – then formulate a conclusion (or more accurately usually a new hypothesis to test), you’ll be able to try different ways and keep track of them.

This might help avoid ending up feeling like you are banging your head against a wall or are trapped between a rock and a hard place.

Societal norms or rules can be supportive. They can also be restrictive. Knowing why the rules exist makes it easier to decide if they are still serving the intended purpose.

The overall purpose of a society is to allow humans to work together more efficiently – to better connect. If you know the rules of the game, it’s easier to play, more fun for everyone and you get more play time since you don’t have to explain all the rules.

If someone is not playing by the rules, either they don’t know the rules or they can’t or won’t follow them. Which means that the rules, the system, isn’t working. So the system needs to be updated. Even if it’s just to properly incentivize playing by the rules.

First you learn the rules. Then you follow them. Then you understand them. Then you can change/bend/break them. And if we want to create a better future, documenting them and why you follow them or not will make it more efficient for people in the future to understand them and make their own decisions.

Just keep asking why.