autism

My whys


I mentioned in yesterday’s post that I joined WW (formerly Weight Watchers) mid-September this year. I have a laundry list (Why “laundry”? Wouldn’t “shopping” make more sense? I think so, too). Correction, shopping list of whys. Not the least of which is Tarsal Tunnel Syndrome, a rare disorder of the ankle, similar to Carpal Tunnel Syndrome. Here’s the complete list:
Family – I have two adult children (32 & 25), three grandchildren (4,3, & 1), and a nearly 10 year old on the higher functioning end of the autism spectrum and who experiences ADHD.

Physical Health – Fibromyalgia, Hypothyroidism, Type 2 Diabetes, Sleep Apnea, High Cholesterol, and Tarsal Tunnel Syndrome.

Mental Health – Bipolar 2 Disorder, PTSD, Depression, Binge Eating Disorder.

Because I’m worthy of self-love and self-care.

I’ve spent nearly five years of hard work to reach this point. I had been a toxic person in a toxic relationship. I had severely broken relationships with my two adult children. I was so overwhelmed and depressed I was barely functional. I was so consumed with self-loathing that I hid from the world, making myself sicker and sicker, consuming all the food and media I could numb out on.

Now, I’m working on staying centered in the here and now, continuing to heal, grow, and build relationships with my children, engaging with the world and people around me, and learning how to treat myself with the care, compassion, and love I have and want to have for each person I encounter.

It’s past time for me to become the best version of myself.

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Sleep…or lack thereof

Back in September, immediately prior to the rebranding, I joined Weight Watchers (more about that later. Or you can head over to IG @humaninrecovery and see what’s been happening.)

Every week is a new topic of discussion about mindset, behavior changes, and achieving goals. I call it DBT Lite. This week’s topic is sleep.

Sleep doesn’t love me as much as I love it. It seems as if it never has…at least not since adolescence. I mean, I’m writing this at 2:45 A.M. because sleep abandoned me.

Correction: my lovely, not so little, daughter chased it away and it’s eluded me ever since, four+ hours now. Now, she’s sound asleep and I’m wide awake. *sigh*

Supposedly, not having my phone in the bedroom with me would help with getting back to sleep. I’ve tried. Can’t do it. It’s my alarm. It’s my fidget. It’s where I do the brain dump. It’s how I run my brain down until sleep is possible again.

I have horrible sleep hygiene…always have. My room is a cluttered mess. My bedroom & bed are multipurpose locations. My bed is shared with a growing, nearly 10 year old child with sensory issues and needs. So, she’s either burrowing into me, flailing arms in my face, and/or hogging the covers. Occasionally, she snores and breathes through her mouth…Her dad sent me an article yesterday which suggested an exam with an ENT could turn up some medical condition causing sleep disruption which can present like ADHD. More on that later.

In addition to clinging to me like a baby gorilla, she insists on listening to “girl music” when she’s ready to go to sleep. Read: female pop artists. She goes to sleep fairly easy once the music is going. Not me. For someone who has words constantly flowing through her brain, pop music is especially unhelpful when trying to go to sleep. Any music with words is, including what she calls “God music,” my CCM Pandora channel, heavily salted with music by MercyMe.

Then there’s temperature.

I can’t sleep if it’s warm…she freezes and turns into a heat seeking baby gorilla. I like it cool enough to want my feet under the comforter…yeah, I know, weird. The problem with that is the baby gorilla blanket thief.

Let’s see, what else?

Oh, yeah. My body & brain. I’m a premenopausal spoonie with Bipolar 2 Disorder & PTSD. If the nighttime neuropathy doesn’t get me or the busy brain, the night sweats and apparently shrinking bladder will.

And, so, I guess it isn’t that sleep doesn’t love me. It just doesn’t feel welcomed or wanted. *sigh*

The kicker is that I don’t even drink coffee or other caffeinated beverages to get and stay functional. Apparently, I’m a deceptively alive and youthful looking zombie vampire.

Yes. I’m 49.

This is Day 2 of

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Crazy

You’re not crazy. You’re pain is not a pathology. Your pain makes sense…You’re a human being with unmet needs.
Now This Op-Ed video about depression

Crazy.

“She’s just crazy. I’m done.”

“That’s just crazy talk.”

“How crazy is that?”

“What are you, crazy?”

Crazy.

How often do we throw that word around? We use it as a throwaway label for people and situations we don’t have the time, energy, or inclination to try and understand. It’s mostly a word which people who consider themselves as “normal” use to explain away and dismiss the abnormal.

Guess what? It’s ableism.

What is Ableism? According to The Urban Dictionary, “Ableism is the discrimination or prejudice against people who have disabilities. Ableism can take the form of ideas and assumptions, stereotypes, attitudes and practices, physical barriers in the environment, or larger scale oppression. It is oftentimes unintentional and most people are completely unaware of the impact of their words or actions.”

This definition isn’t only about physical disabilities, it also counts for those experiencing mental health issues due to atypical brain structure and neurochemistry.

Bipolar Disorder
Borderline Personality Disorder
PTSD
Anxiety disorders
Addiction
Compulsive Behavior disorders
ADHD
Asperger’s
Autism Spectrum Disorder (high functioning)

These are but a few examples of things which people with non-neurotypical brains and brain chemistry experience.

Crazy

It is a word which holds a strong stigma. The thought of being “crazy” often causes people not to seek help for symptoms and behaviors which make them feel mentally and emotionally out of control. They don’t want to be labeled as “crazy.” WE don’t want to be labeled and dismissed as being “crazy.” We don’t want to be treated as defective or dismissed because having atypical brains makes us “less than.”

I say “WE” because I have a Bipolar brain which has been affected by ongoing and varied trauma experiences. Four and a half years ago, I was diagnosed with Bipolar Disorder, Type 2, and PTSD. Around the same time, my youngest child was educationally identified as having “High Functioning Autism Spectrum Disorder.” Recently she received the official diagnosis of Autism AND ADHD.

These things cause us to think, react, and act differently than those who have neurotypical brains. We aren’t “crazy,” we aren’t disabled. We are neurodiverse and differently abled.

The thing about the word, “crazy” is that it’s such an inherent part of our American vernacular that even those of us who have been affected and marginalized by the term frequently use it ourselves.

I’m not going to “go off the deep end” (another phrase often used instead of “crazy”) and call out everyone, every time I hear the word used. However, I will start with myself and maybe those closest to me. I haven’t figured out what to say instead, but, I’m working on it. I’ll keep you posted.

Maybe you’ll think about it the next time you hear or use the word.

In case you’re wondering, the August Scrawls Day 3 word is “atypical.”

Writing Prompts: August Scrawls, Days 1 & 2

I was stymied after prepping Thursday’s post on Wednesday. I had run out of the current prompts available on the social writing app I’ve been writing on – intermittently – for well over a year now. I needed more prompts, until either new prompts showed up on lettrs or my own ideas started flowing.

Did you know there’s a whole community of writers using Instagram? #writersofinstagram and #amwriting are a great way to locate fellow word warriors…but, you probably already knew that.

Nowadays, there’s a hashtag for EVERYTHING under the sun, on God’s green earth…(had to do it once “nowadays” showed up). So, I searched #augustwritingprompts. Lots of options popped up. Several set up scenarios and situations to write about. Not for me. I’m more of a minimalist when it comes to prompts. Give me something to interpret and write my own scene about, in my own voice.

I found such a prompt! It’s called August Scrawls and is hosted by @hopelessperriott on Instagram. A word a day! I can work with that. I hope.

Here are my first two days’ efforts:

Hunger

He hungrily watched her lips wrap around the oblong orb. His mouth went dry with thirst as a tiny drop of clear juice slowly meandered down. His pupils dilated as she captured it with her tongue. He longed to wrap his hands around the soft, golden skin. Mouth watering at the thought of tasting the firm flesh, he asked…

“Do you have another apricot?”

Gotcha! At least that was the idea. The word for Day 1 was “apricot.” How’d I do?

Here’s Day 2:

A Spectrum Moment

“Children, it’s time to work on your spelling words. Jennifer, will you please hand out this week’s practice sheets?”

Mrs. Vee, the teacher, surveyed her overly full classroom. Her eyes rested on the student in the far back corner, Shandi. Shandi was seated on a stool at the science workstation. Her head was bent as she intently stared down at the paper in front of her. She reached for a black marker and began drawing.

Mrs. Vee watched as Jennifer cautiously approached Shandi. Jennifer attempted to hand Shandi the paper. She kept looking at her artwork, seemingly oblivious to Jennifer’s presence. Then, Jennifer bravely placed the paper between Shandi’s face and the paper she was drawing on.

She reacted as badly as expected. The crumpled paper plummeted to the floor.

“Shandi! That’s enough. It’s time to work on spelling. You’ve had your art time. Now it’s work time.”

Defying her teacher’s authority, Shandi climbed down from her stool and stormed out of the classroom, disappearing down the hall to the CBC, Contained Behavior Classroom, where her IEP, Individual Education Plan, said she could go in times of distress.

Mrs. Vee sighed, then called the office, alerting them that Shandi had left the room, once again. “We really need more support from the District’s Autism Specialist,” she thought to herself.

Resigned to the status quo, she turned and addressed the classroom, “Who has completed writing five of the words?”

The word was “authority.”

This scenario is taken from the pages of my life as the parent of a child who interfaces with the world through the Autism Spectrum and experiences ADHD. There were a lot of these kinds of incidents over the past two school years. It’s felt good to interact with and try to support and encourage teachers who care. Most General Education teachers don’t receive much training or education in supporting kids with various special needs. I’m grateful my daughter is where she is.

Anyway, days 1 & 2 down. Hopefully, I’ll catch up with 3 & 4 tomorrow.