autism

30 Day Writing Challenge – Days 10-13: 4 Day Catch-up

Day 10: If you had 3 wishes…
Day 11: If I were 16 again, this is one decision I’d change.
Day 12: I’m going to do this amazing thing today. It will…
Day 13: What is something you’ve said that you wish you said differently?

Four days’ worth of prompts. What happened? The prompts for days 10, 11, and 12 were a little late and I was otherwise occupied. Yesterday was Mother’s Day and I wrote a letter to my mom, who committed suicide when I was 12. It was a day of grieving. I let the tears flow and didn’t try to stifle them. It was a difficult thing, but, I did it. Today has been a day of recovering from a week caught in the limbo land of my ex – too long of a story there. Someday I’ll tell it . . . maybe. I also collaborated on creating a Numbers spreadsheet for a game app I play. That was fun and felt somewhat productive. I also dealt with some medical service issues for my youngest. Another long story that I will be telling sometime soon, I think. I dozed a bit off and on, washed accumulated dishes, and that’s about it. So, here I am looking at these prompts and feeling a bit overwhelmed and stymied.

However, I am reminding myself that I don’t have to write profoundly or perfectly. Nor does it have to be a pretty little package of poetry or prose. The writing itself is what’s important, right now, as I work toward developing my writing muscle and mental habit. So, here I go.

Day 10: If I had 3 wishes…

  1. I had a couple of people who would come in and help me deal with ALL the clutter, mostly paper, that I’ve accumulated over the years. I moved into the place I’m at now almost nine years ago. I still have unpacked boxes and crates filling my bedroom and hall closets and completely filling up the space under my bed. I want to have all the stuff sorted into the donate, discard, and keep categories. Then, I want all the “keep” stuff totally organized . . . I just don’t want to be the one doing it, or at least not doing it by myself. Just the thought is overwhelming and my brain starts shutting down at the thought of it all.
  2. I had a personal trainer/nutritionist to work with me until I could get my kitchen and schedule overhauled to enable me to take better care of my health by developing habits, establishing routines, and learning how to meal plan, prep, and shop for myself, while also dealing with the Binge Eating Disorder/Depression that make self-care in these ways so challenging.
  3. I had a life/writing coach and editor to help me figure out the steps and process of gathering, organizing, and editing my writing in a way so I can write some books. I have been told I need to publish my writing and that I should write a biography. I want to do these two things, I just really don’t know where to start.

Day 11: If I were 16 again, this is one decision I’d change.

I’ve really been thinking about this one a lot. 16 was a pivotal year for me. Pretty much every decision I made led me to be the person I am today and led to the children and grandchildren I have. If I could make changes and still be guaranteed to have the same family I have today, just with fewer difficulties and more functionality, then I would stay in school and not run away from home with a man who was 14 years older than me, a con artist, and the father of my first child. I’ll have to write about this at more length in the future. Suffice it to say, any change I would make would wipe out the life I have today and the people in it. That’s not worth making things look the way I wanted them to back then.

Day 12: I’m going to do this amazing thing today. It will…

I did the amazing thing yesterday. I wrote the letter to my mom. I grieved for her and for myself. I hunted for and found a poem I had written to her at a time when I was struggling with my own mental health as a young, single, depressed mom. It eased some of the emotional weight and pressure I’ve been harboring for a very long time. I felt better for it.

Day 13: What is something you’ve said that you wish you said differently?

I wish I could say things to my youngest daughter in ways that don’t trigger her fears and anxiety. She experiences the world through the Autism Spectrum. She’s very literal. She’s scared of the dark and when she’s exposed to things in our culture that most people can differentiate between reality and fantasy, she can’t. She fully believes that Chucky, Pennywise, and Momo are real and will come to get her in the dark. She also has behavior issues from emotional dysregulation. During those times when she acts out in extreme ways, she attributes them to an aspect she calls Moonlight. She speaks of it as if Moonlight is in control of these destructive behaviors and actions. I struggle with understanding whether Moonlight is an actual manifestation of something additional going on with her mental health or if she’s a construct she uses to scapegoat and avoid taking responsibility for her actions. Both of these things often frustrate and exasperate me and I speak dismissively, with impatience, doubt, or frustration. None of those things are helpful in any context with neurotypical people. With her and her autism, they are really detrimental and get in the way of us being able to have constructive and positive interactions.

How was that for a four day catch-up wrap-up?

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Dear Mom

Dear Mom,

We never really had a chance to grow in a relationship together. You were gone from my life too soon. Before that, you were busy battling your inner demons on your own, unbeknownst to me. All I know is that we never had a chance to grow together and learn who the other was, firsthand.

I resented and despised you for so long. Since I was already that resentful, angry, confused, lost little girl, I was numb when I learned of your suicide. The women around me were wailing and crying. I knew they thought I was wrong for not crying, too. So, I manufactured the tears that would keep me “safe” from their stares of condemnation. My grief was an empty, hollow thing, amorphous and disconnected.

It’s been walled away for such a long time. I don’t think I believed it really existed. Though, there have been times it seeped through the cracks and manifested.

The first time was eight or nine months after that fateful night.

There was a boy who I’d started a friendship with, once school started that year. 7th grade is hard enough. But, I was the new kid, again. My saving grace was that it was everyone’s first day at the new school. So, I made a friend a little easier than all the times before. Anyway, I told him about you and what you had done. I don’t remember how he reacted to that news.

I do know that I rather quickly fell out of favor. But, that probably had more to do with my highly reactive emotions and physical attacks toward anyone, any boy, I thought was teasing and making fun of me…mostly for being fat. Anyway, by the end of the school year, I had one friend…and it wasn’t Jason.

There was one girl, Cathy, who was friendly to everyone. I wanted her friendship, but didn’t know how to be a friend. So, I hovered on the fringes. One day, in the cafeteria. I wanted to talk to her. She was surrounded by others, including Jason. He got irritated by my presence and said something rude, telling me to go away. I told him to go to Hell.

“I’ve already been there…and your mother’s just fine.”

For the first time, my tears for you were real. Of course, I only let the walls of the bathroom stall see them. Then, I pushed them away. Later that day, I marched to Jason’s house and basically threatened his life if he ever talked about you again. But that was pretty much the last time you were part of my childhood.

The next time, I was about 22 and going through my first nervous breakdown. I saw your face, instead of my own, in the bathroom mirror. Obviously, I was more than a little freaked out. So, I did what I do. I wrote it out in the form of a poem:

The Dolphin and The Sea

I saw your face this morning,
as I peered into the glass.
I was startled into yearning,
and knew I had to ask.

I reached beyond the present,
deep into the past;
to find the answer, so unpleasant,
to discover peace at last.

Why did you leave? Where did you go?
I had no chance to tell you all I wanted you to know.

You were my heroine. You were my bane.
You were bright and shining, and not quite sane.

You were full of madness, yet masked it well.
You hid your sadness, ’til your wall fell.

Once that happened, there was no hope.
You were so frightened, you could not cope.

I turned from you as you turned toward me.
I disappointed you. You disappointed me.

I never intended to be your disciple.
I never intended to repeat your strife.
The time has come to break the cycle.
It is time for me to separate from your life.

Though your time on earth is ended,
You are still a part of me.
You and I are spirits, kindred,
as the dolphin and the sea.

The point is, I miss you. I always have, even though I didn’t know it. I miss not having a mom I can turn to when my heart is hurting because I see my kids struggling and I want to ask you how you did it…except, you didn’t. You couldn’t. I know that, if you could have made other choices, you would have.

But, I did learn from you. You taught me to never give up on myself and to never leave my kids behind, no matter how lost, alone, confused, and overwhelmed I became. You also taught me that no matter how angry, mean, and rejecting my kids were, to never let them go.

Those lessons have paid off. I’m turning 50 in a few weeks, Momma. 50. Can you believe it? You didn’t make it to 29. My kids are 32, 25, and 10. I have three grandkids: 5, 4, and 1.

It hasn’t been easy. It’s still hard today. But, it’s getting better. My oldest, who was so wounded by me and who basically disowned me seven years ago, called the other day. (We both worked hard and reconnected over the past several years.) Anyway, he called me to tell me he realized and is glad that I never left them. I get to have a relationship with my adult daughter and her three children. I’m actively parenting a brilliant, challenging daughter who experiences the world through the Autism Spectrum.

I’m sorry the Depression robbed you of so much. I hope you know how much you gave to me and to the world. I’m here. Your grandchildren are here. Your great-grandchildren are here. None of us would be, if you hadn’t been first. I miss you. I love you.

Forever your daughter,
Me

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.

This is the 3rd post of 30 for

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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.