Back when O was a toddler/preschooler, we would make the assumption he just 'didn't care' about various holiday stuff, because he didn't show it on the outside. But, you know what? We were WRONG. We were ignorant to the fact that how he FEELS won't always show up on the outside.
Eventually, we would find some things he would get really outwardly excited over, and we were like, yay, we made him happy! But, we didn't realize he WAS excited, and he looks forward to holidays and gifts, and candy just like many children do. That was OUR ignorance.
Once he learned to type, we got the reality check that he does look forward to pretty much everything. He loves Easter, and visiting his grandparents. So much so, that he gets overwhelmed by the intensity of his happy feelings. Many people don't understand this.
Did you know that people were 'cr*wd funding' even hundreds of years? People would take out spots in the newspaper and ask for money for widows, or other people in need. Cr*wd funding is NOT new, we simply have new platforms to do it on.
Yeah, it's pretty fucked up that people NEED to rely on the goodness of neighbors to scrape by. I wish we had a government/society that gave people the support they need, and everybody HAD their needs met, and nobody was forced to ask for help.
I remember when we moved into govt housing when I was a tween/young teen. We had nothing, literally nothing, outside of maybe a single box of personal items each. All of our furniture was donated to us. We had tgiving dinner around a coffee table with donated food.
There's a common, and prevailing idea that Autistic people hate touch. Now.. /some/ do. I can and do get 'touched out'. However, there are plenty of Autistic people who love touch, heavy pressure and need it to thrive - my son is one of those people!
He LOVES touch - hugs, cuddles, roughhousing, tickling (he comes to specifically ask for it), piles of blankets, stuffies, etc. And, most of the kids who I know who have similar traits to him - nonspeaking, etc, they actually happen to be high touch kids as well.
Now, I'm not saying every nonspeaker is that way, I'm just saying the ones I know the best ARE that way, they're very physically affectionate, and love to cuddle and press on people.
Learning how to be open and heal from my trauma has been a difficult, but incredibly rewarding process. It's going to be an ongoing thing, probably my entire life, but I feel like I have gained so much just in the last five years or so.
Mentally, I feel like I am the healthiest I've ever been, and I know myself better than I ever did in the past. Part of it is age, no doubt, but part is just embracing my neurodiversity, and realizing I am NOT broken.
Being open and sharing my journey has brought me so many wonderful connections with people, that I never dreamed I would have.
Z and I were both tired and on edge tonight. There was some definite tension going on, that was building as Z got ready to go to bed. Then, I decided to change my attitude, and I put my energy into being silly instead of angry.
I became over the top silly, and she couldn’t help but start laughing and being silly in return. We ended up ending the night in a positive manner that lifted both of our spirits. You would be surprised at the relief YOU get as a parent, when you put anger away.
Now, I promise you this: I do not always make the right choice. I don’t always win against my own challenges, and I make mistakes in how I handle things. But, this is an important reminder…
Even at my MOST FIT, I was still disabled. I just didn't know it, and instead I constantly overdid it, causing myself MORE pain, and dismissing my own valid disability issues. Instead of seeking help for the pain I was experiencing, I told myself I just needed to be tougher.
I would look at other people who could run daily, or do tough, hour long workouts daily. I never could do that. No matter how 'fit' I was, I would still experience pain and fatigue. Basically, my body would force me into recovery days, and I would feel awful.
And, of course, in the times I DID try bringing it up, doctors would tell me nothing was wrong. When I was pregnant with O, I started having these issues with my left middle toe. I STILL HAVE THEM! Almost 9 years later!
So, what IF someone who self-diagnosed as Autistic was wrong? What exactly is going to happen? It's not like 'officially' diagnosed Autistic people are being showered with endless support and acceptance, so what exactly is a self-diagnosed person harming? NOTHING.
People who realize they are Autistic do it because they've been searching for something. They've been trying to understand themselves, why they see the world the way they do and looking for community. Why is that a bad thing? Why is someone feeling at home in their skin, bad?
It's NOT bad, but what people don't like is that self-diagnosis puts the power in the hands of the people, instead of the elite few. People don't WANT disabled people to have their own power. People want to continue to control and deny disabled people.
I was misdiagnosed as bipolar as a teenager, heavily medicated, forced into hospitals and harmful 'professionals' which left me with serious trauma and never actually helped me feel better with any of my challenges.
It wasn't until realizing I was Autistic and ADHD, and then being on ADHD medication, that really changed my life. I have been on SO MANY medications for 'mental illness' and nothing has worked like ADHD medication has.
Doctors, professionals, etc are NOT immune to bias. The DSM has been modified many times, and still needs further modification. There is a big difference in what people understand about the brain vs the body. Science is ALWAYS a work in progress.
So, O was not happy with me last night after an encounter right before I was going to put him to bed. So, he went to my spouse and wanted HIM to put him to bed. He was trying to pull him up the stairs to do bedtime instead of me.
I am sorry he was annoyed with me for the necessary thing that happened, and we have already had our moment, but I loved seeing him express himself and his wants, and we switched kids for bedtime. Like, even if he was mad at me at the time, he's allowed, and he expressed it.
Sometimes my kids are going to get mad at me. They aren't always going to agree with me. That's allowed. They are human and they're allowed to disagree with their parents. They're allowed to disagree with other adults, too.
If you aren't a nonspeaking Autistic, you simply cannot understand what it is like to be one. I am Autistic & I will never FULLY understand what it's like to have such a strong body/mind mismatch like what my son has. We have a lot of commonalities, but we aren't the SAME.
It has been a journey to try and understand. Like, I always knew he was this amazing fire inside, and he's certainly proven it, but it doesn't mean I know what it's like for him to live with his body and brain every single day.
And, I'm not trying to vilify it, but I know he's expressed he just doesn't know why his body reacts in certain ways at times. I know he gets frustrated when he cannot express himself the way he wants to at times. That's why I am really trying to give him as much as I can.
I live in this really weird in between spot that not a lot of people live in. I grew up in extreme poverty, and now I am middle class. I live in a 'nice' neighborhood in a 'nice' house, that we happened to get a killer deal on at the time.
I normally feel like I don't belong here. I am still the poor girl that I grew up as, inside. Yet, I spend time with people who have money, and even if they had less growing up, not many people can relate to what I went through and how that trauma affected me.
It's hard for me to feel comfortable with people who've never experienced oppression of some sort. That's why pretty much all my friends are traumatized, disabled or both. Plus, a lot of immigrants and BIPOC. Those people are the people I feel safe with.
When people talk about their Autistic, or otherwise disabled children, they often bring up 'independence'. But, we need to shift from the idea of 'independence' to 'autonomy'. By providing support to O via typing, he has more AUTONOMY, and therefore a higher quality of life.
If I simply said 'well, he has to be fully independent' that reduces his quality of life, because he wouldn't be able to fully communicate the nuance of wants and needs he has. Independence is a false concept, anyway. Most people aren't ever 'fully independent'.
But for some reason, with disabled people in particular, there is an obsession with independence and bootstrapping. And, then we leave people struggling so hard that they really have no actual control over their lives, because they can't get that first step up.
Disabled children need to learn how to identify, accept and seek support for their needs.
Disabled adults need continued acceptance AND support.
Disability doesn't magically go away at age 18.
Give me a complex problem, a thick, verbose book, anything that I can sit down with by myself and figure out - sure, I can do that all day long.
Shopping, parties, paperwork, going to the dentist, all of that shit? Overwhelming as fuck. It's HARD.
So many things that are supposedly 'easy' or 'routine' for people are hard. And, if you say they're hard, people look down on you for it. But, it is hard. Do you know how many times in a grocery store, it felt like I was suffocating and I wanted to lay down?
Helped Z go through and do a clothing 'reset' and I've been working on listing stuff on Poshmark.. finally. I used to give clothes away all the time, but I need the money, so I am going to try my hand at actually selling stuff.
We also picked up a few more things at the used clothing store for her 'aesthetic'. I love that she's expressing more of a set style that she likes, and it may be the polar opposite of what I like, but I'm trying to understand and support her feeling good as herself.
If you want to follow my Poshmark, you can see it here: poshmark.com/closet/awesome… Right now I am starting with some of the oldest stuff I had packed away (I am definitely nowhere near a size two anymore lol), but I have tons more to add.
Story time. Three years ago, when we were at this same beach and same condo, we met a family with two kids that we hit it off with. They even live in our local area! Then, go figure, we ended up showing up again at the same place. They are also creatures of habit.
Anyway, this time we are basically spending the whole week at the same time, and it has been wonderful. Their kids are ND, so they treat our kids completely normal - they respect their differences, without othering them. It’s been absolutely wonderful, and a bit uncanny.
I guess life is telling me we really need to be friends, because it brought us together again. And, to see their son ask O to play, just like any typical kid, and not be uncomfortable around him, it means so much.
So, I started my morning with absolute panic, finding out one of my daughter's fully vaccinated dance teachers, who she was literally just in a room with YESTERDAY, has Covid. My daughter has been masked the entire time, thank god, and I hope it was enough. But, I'm freaking out.
Bless her, she has even offered to wear a mask in the house to protect her brother, just in case. We will go get her tested in a few days. Please keep your fingers crossed for us that the mask did it's job. Thankfully, we can lock down the next couple of weeks.
It's so, so fucking frustrating, because her dance studio was like SUPER SAFE and masked, and distanced for most of the time, and then like, it just all went to the wind, and most of the teachers stopped wearing masks once they were vaccinated (except her solo teacher, yay).
When you run a #smallbusiness - there is so much that goes into it, that people don't see. The rates I charge for my services have to cover my time for so many things I do 'behind the scenes'. It's NOT only my time spent directly with the client.
Outside of the regular stuff like photographing people, emailing or phoning them, editing, reviewing their photos with them, designing, placing orders, delivering or mailing orders.. There is so much more stuff I do that takes time.
I have to keep my website updated, do accounting, pay my taxes, do social media, keep my equipment and software up to date, review and modify documents like pricing, contracts, releases, etc. I need to update my pricing guide, order supplies I'm low on, clean my studio.
Reading the book Caste has really given me a lot of food for thought. It furthers my desire to educate people, without getting into yelling matches. How can I better use my energy to reach people and make a change, without expending energy on a few people who are resistant?
I'm not saying people aren't allowed to be angry. Marginalized people are absolutely allowed to be angry. But, as a white person in particular, if I'm trying to be a good ally, it's really not MY place to be angry, I need to do better and help save the energy of Black friends.
And, when it comes to being disabled, I just need to choose where I spend my spoons. Is getting into an angry argument with someone who's concrete in their ways the best use of my energy as a disabled person? Or, is it trying to reach those people in the middle?