autism

Back to School and other updates

I did it! I’m back in college after 25+ years.

I had basically given up on the idea that I would ever get to go back and get my degree. Of course, after so long, I’m actually starting completely over. So much so that I’m enrolled in a mandatory College Success Course!

If it wasn’t for the fact that the organization I work for unionized, I wouldn’t be able to attend. If you have a union, and you aren’t really aware of the benefits it offers, please investigate it. You might discover something you didn’t realize would move you forward in your path or help you shift to a different one.

Anyway, I’m super excited to be back in school. It’s going to be a long road. However, if I focus on that, I will get overwhelmed and probably discouraged. Realistically, to get to the level I want to in my career, I have to get my Master’s and I’m at the beginning of obtaining my Associate’s. Standard educational timelines mean six years, at least. Meaning, I’ll be at least 60 yrs old before I would be able to practice as a clinician and 62 before I could have my own practice, independent of immediate supervision. That’s if I were able to go full-time. Which I can’t.

Why can’t I? I am about to be officially, completely single-parenting a 13 year old on the Autism Spectrum while working full-time, and being a fully accessible grandparent to my four grandkids. All of this while managing mental and physical health conditions and fighting to survive financially. Adding full-time college on top of all of that isn’t realistic.

Fortunately, I’m enrolled in a program that breaks the terms up into eight week segments. I’m taking four credits this first eight weeks. I’m registered for six credits for the second eight weeks. That puts me at almost full-time. Depending on how this first eight weeks goes, I may drop one of the courses for the second eight weeks. I don’t want to do what I’ve done previously and take on too much, too soon, overload myself, get overwhelmed, and meltdown. Slow and steady wins the race, yeah?

In the meantime, I’m also needing to file bankruptcy and my car has broken down.

My wages have been being garnished for over a year. The cost of the bankruptcy and hiring an attorney will likely cost close to what I have left in the garnishment and mean making a payment arrangement. However, it will also prevent a few other debts from going to court. I hate the idea of bankruptcy. I absolutely hate it. It’s just that financially I will be barely staying afloat once the fallout from my pay raise happens.

You read that right. My pay raise is going to create some financial difficulties. Why? Well, because the path from dependence on the government and social services to self-sufficiency is set up for people to fail. With the disappearance of the middle class, how easy do you think it is to scramble out of poverty and get a foothold into sinking sand?

The aforementioned health issues have me on multiple medications, including an insulin pen. Up to now, I have qualified for the Oregon Health Plan under the Affordable Care Act. Once my pay raise kicks in I will lose eligibility for that insurance. I’ll be paying for medical through my employer and have to set money aside for the cost of prescriptions. I’m not sure how much all of that will be, but, I’m quite sure it will likely be over $200/mo. I’ll likely lose the full amount of housing subsidy I’m currently receiving. That will be an extra $600-$700/mo. I will lose the Supplemental Nutrition Assistance Program (SNAP), aka “food stamps.” That’s another $400/mo. I’m looking at losing over $1,200/mo. support I qualified for, WHILE WORKING FULL-TIME, with a pay raise that will raise my gross income by $583/mo. So, I suppose not having a car to pay maintenance, gas, and insurance on is a good thing.

I’ll be making more than $20/hr. still barely making ends meet. Between taxes, retirement savings (which is losing pace with the economic issues facing our country), and the garnishment, I’m currently taking home half of my gross and surviving on about $1500/mo. plus the subsidies I listed above.

Let’s recap: Back to college – YAY!!! Broken car – BOO!!! Pay raise – WOOHOO!!! Losing benefits – UH OH!!!

Oh, yeah, what am I studying you ask? Social Work.

Yep. That’s right. I’m studying to go into a career to try to help people, like myself, navigate broken and disconnected social service systems, while attempting to navigate those same systems myself.

I’m already learning to be grateful it’s online and that I don’t actually have to interact face to face with the privileged folks who seem to think the English Poor Laws were a good thing and that we should bring them back.

Lord, help me.

Trying to care for me
In the five years between these two photos:
I stopped being employed;
I left a two decade toxic relationship;
I was diagnosed with hypothyroidism, diabetes, bipolar disorder, and cPTSD;
My youngest child was identified as experiencing High Functioning Autism Spectrum Disorder;
Two grandchildren were born;
Relationships with my two adult children have been restored and improved; and I’m navigating the ongoing process of co-parenting with the ex.

I guess, my adult daughter could be right about vampire DNA 😂
02/24/2021 – In the four years since the above collage photo, I’ve become grandma to two more grandchildren (4 GRANDKIDS! 😲 🤯); Fought time and time again to stabilize from hypomania & depression; worked my @$$ off to get employment ready; completed two vocational programs simultaneously; and became employed during a pandemic…all in the midst of chronic turmoil and drama.

The smile hides depression and self-loathing…a severe lack of self-esteem and sense of futility. The hair and angle of the pic hide the double chin and side padding of obesity. You can’t see the fibromyalgia, hypothyroidism, type 2 diabetes, PTSD, Bipolar 2 Disorder, and Binge Eating Disorder. Yet, I look healthier and happier than ever before… according to an FB friend.

I wrote about being functionally depressed and nothing has really changed. I still pretty much only venture forth from my dwelling are occasional grocery shopping trips and to to work. My ADLs (Activities of daily living) are sporadic – personal hygiene is taken care of whenever I have to leave the apartment or I feel too disgusted by myself. Nutrition is not a frequent thing…I may or may not eat 2 Baked Lays single serve bags of chips for breakfast or dinner. One thing has improved – I’m not waking up gasping, choking and feeling like I may have had a heart attack because I’m using my C-pap machine to deal with the sleep apnea again.

Despite the depression, I did a thing and I took a risk. I applied for a Full-time position within the organization I am currently employed with. It’s a Peer Support position, which I completed my training, with flying colors, just as the COVID shutdown started last year. I just emailed the department that manages such things to ensure my application has been received. It has been received and submitted to the hiring manager.

I’m also reaching out or responding to opportunities to connect with people I’m connected to through my faith community. I’m participating in a book study of Rich Villodas, The Deeply Formed Life. I participate in our weekly Zoom service. Right now we’re discussing how it might look when we start meeting again, since some of our faith family isn’t able to engage and participate often unless it’s remotely. I submitted some ideas, which were favorably received.

Partially because of the diabetes, I’ve decided to join a couple of my friends on a menu planning journey next month. I’m in no way prepared. The logistics of my life are chaotic and kind of overwhelming. So, I’m pretty sure I won’t be able to make it a complete success. However, I reminded myself “progress not perfection.” That made my inner perfectionist cringe in horror.

To that end, I decided to focus on breakfast. Simple, quick, easy diabetic friendly breakfasts I can prep primarily in the microwave. The first recipe I found was Breakfast Burrito in a Jar on Diabetic Foodie. Since I don’t have jars, I followed the link to the next breakfast, Mexican Microwave Scramble.

Between the Depression, Hypothyroidism, and fibromyalgia, as well as circumstances in my life, I’m really fatigued & low energy. I’m not sure how I’m still functioning at all. I just know that no matter how close I come, giving up isn’t an option.

How are you doing? For real, sometime sharing helps.

Functional Depression

We’ve had a winter snow and ice storm for the past few days. Not necessarily as severe as many other parts of our country and throughout the world…places where the residents ridicule and demean us for not being prepared and whining about a little bit of snow, which shut down our city, to the point where mass transit was cancelled and cab service was several hours late. Normally, this kind of thing would cause people to isolate and get cabin fever…but, pandemic. We were already there.

This also happened over Valentine’s Day weekend. Just another weekend for me. Except, as an essential worker in the mental health field, I still had to report for my graveyard shifts. Fortunately my supervisor has a 4WD SUV and transported me to and from for a couple of shifts. I went to work and fought against fatigue and sleepiness. I seldom sleep well during the days on my night shift weekends. I have an apartment full of people, including four littles six and under. Plus, insomnia. I’m usually awake within two to three hours after laying down.

I love my family, but, the relationship tensions of eight people, a dog, and a cat occupying a two bedroom, 1 bath apartment are inescapable. Between the pandemic and the exorbitant rise in housing costs, I have no idea when my adult daughter’s family of six will be able to get into their own space. It’s challenging to parent my 12 year old daughter with an autistic brain, in a small bedroom that we share, when she wants nothing to do with the nieces and nephew. Their sleep schedule is completely off center from ours. I can’t access the kitchen when I wake up early or get home from work because people are sleeping in the living room, right next to the kitchen. Additionally, my grandkids (and their parents, lol) are kind of like locusts. If they can see it, it’s fair game. So, it can be challenging keeping food for my youngest daughter and myself available when we need it.

So, I ordered a mini-fridge and microwave for my room. Basically I’m turning a small (miniscule) bedroom into a dorm room shared by me and my youngest. A couple of weeks ago, I spent 10-12 hours cleaning and organizing the room. Now, I need to do more in order to make room for the new appliances. I honestly don’t feel up to it, but, the appliances are supposed to be here in the next four or five days. Which means I don’t really have a choice.

Pandemic. Essential Worker. Underhoused. Family tension. Parenting struggles.

Even though I have the support of my faith community, I don’t feel connected to anyone particularly, though I know they would do whatever they could to help me out if I needed it.

I’m feeling isolated and alone in the midst of the chaos.

I’m battling my mental health issues. I’m struggling with physical health issues. My self-esteem is in the crapper…hating myself because of ingrained fatphobia.

Reading all the Valentine’s Day challenges – the love stories of the friends near and far on Facebook, is becoming more bitter than sweet.

My head feels like it’s going to explode. My chest is tight and it’s hard to breathe. My eyes won’t stop leaking and my sinuses are getting stuffed.

I don’t understand why I feel so isolated and unloveable. Listening to Justin Bieber croon how fucking lonely life is, just really resonates.

So, I’m in a pattern of self-sabotage with my health, which feeds into the self-esteem issues. I feel hopeless about making the changes I need to in my current circumstances…and I’ve basically given up trying. I shower and dress when I need to go to work. I eat bags of chips and drink soda for breakfast some days. Despite the type two diabetes, I can’t stop with the soda and carbs. I see the 150 extra lbs I’m carrying on my body and feel self-disgust and think, “of course no one is going to love you like this.” I want to hide and not be seen by people.

But, I still go to work. Sometimes I go to the grocery store. But, that’s all. That’s really where most people are at during the pandemic. The thing is, that was my life pre-pandemic, except for weekly excursions to church. The loneliness and isolation are exhausting. I have no energy left to love and care for myself.

I really need to get and stay on-track with my meds.

De’ja’ vu all over again: Recreating the past
Photo by RF._.studio on Pexels.com

Parenting is hard. Parenting a child with special needs is hard. Parenting a girl in active adolescence is hard. Parenting from a place of trauma is hard. Parenting an adolescent girl with special needs when all aspects are points of trauma in your history, is beyond hard.

I feel like I’m constantly falling down, constantly lacking, and constantly failing . . . even though I know I’m doing my best. I know I’m a better parent now than I was seven years ago. I’m a better parent now than when my oldest daughter was the age my youngest daughter is now, 12. I’m a better parent than my mother was able to be when I was 12. But, I still don’t feel like I’m a good parent or the parent my child needs and deserves.

The reality is that I am really struggling. I love my child but I don’t like her. I love her so much and want so much good for her, but I find myself resenting her for things she has no control over. I’m so proud of her and amazed by the things she does and how strong and determined to be herself she is. At the same time, I am so incredibly ANGRY at how her strength and determination flatten and steamroll the people around her . . . like me and her nieces and nephew. I love her but I hate being her mother.

That’s awful. I know it is. But, it’s also my truth. It’s a convoluted truth rooted in the trauma, rejection, and abandonment issues between my mother and myself when I was 12 years old. Issues that I will never be able to work with her on because she died . . . committed suicide . . . when I was 12.

My little girl isn’t so little anymore. She turned 12 at the beginning of December. She’s taller than me . . . mostly because, like many children on the Autism Spectrum, she’s a “toe walker.” She travels on her tiptoes. Walking with her feet flat from heel to toe is like an impossibility for her. There was no physical reason for it and we put her through physical and occupational therapy to try to prevent any negative effects from the toe walking. To no avail. Now it’s reaching the point of discomfort and pain for her to not walk on her toes.

I wish I could let her be herself, with her idiosyncracies and quirks, without feeling so beyond frustrated and annoyed. She absolutely refuses to do anything or engage with anyone other than her preferred activities and people who she wants to be around. I feel powerless, especially in light of the societal expectations, rules, and norms regarding parenting and education, especially with children who have special needs. The thing is she doesn’t appear or seem to be autistic to most people. Even her medical evaluation team had difficulty coming to agreement regarding her autism. She’s lived in emotionally traumatic circumstances since conception. So, there are behaviors and reactions that stem from the autism and there are behaviors and reactions that are rooted in her trauma exposure history. Stir in pubescent hormones, in the middle of a pandemic that has everyone acting off and dealing with various types and degrees of trauma, and I have my very own Katie Kaboom.

If the truth be told, I’m probably as much of a Katie Kaboom as my daughter is . . . or at least I feel like I’m on the verge of exploding with her a lot of the time. There’s this surreal sense of loss of control and imminent danger creating a sense of fear of myself and what I’m capable of.

The last memory I have of an interaction between me and my mother lingers on the edges of my consiousness most of thetime when I’m around her.

I had recently turned 12. It was late June or early July, I think. We were living in an old adobe group of single story apartment buildings that had been built to use as military barracks in the 1940’s. Adobe buildings surrounded by asphalt. No trees. No grass. No shade. It was unrelenteningly sunny. The air was still and stuffy. My mom was working as a night janitor with her brother and his wife, who lived in the building catty-corner from ours. While cleaning may have been her job, it wasn’t something that was a priority in our apartment. We were a couple of clutterbugs. So my mom was embarrased for people to see the condition of our apartment. All the doors were shut tight and windows shuttered and covered so no one could see in.

I was hot. The heat was draining and I had no energy to do anything. I just wanted to breathe and I felt like I was suffocating in the stuffy heat of the closed apartment. I didn’t want to go out in the shadeless parking lot/driveway that surrounded the apartments. We had only lived here for three or four, maybe five months. I didn’t have any friends and didn’t have anywhere I could go. I was restless and listless at the same time. I decided to stand in the doorway, with my face pressed against the doorframe on the right, the door pressed against my left cheek, my stocky body filling the area between the door and it’s frame. Nothing visible from the outside.

She was embarrased, exhausted, and overwhelmed . . . I know and recognize this now, but at that time I only thought she was being controlling and unreasonable. It felt like what I needed and wanted didn’t matter to her, even a little bit. She was yelling at me, trying to get me to close the door. I was yelling back, telling her how no one could see inside. I don’t know how long it went on. Not long, I’m sure, but, it felt like it stretched on for a long time, each of us getting angrier and louder. I can’t remember specific words. But, it wouldn’t surprise me if I had called her names or cussed at her.

Suddenly my head was jerked back by my hair and the next thing I remember is that I’m laid out across the sofa and she was sitting on my legs, preventing me from moving. I was yelling at her and trying to kick her off of my legs. Finally, I was able to sit up, bend forward, and I bit her on her thigh as hard as I could until she got up.

I don’t really know what happened after she got up. I know my uncle burst through the door a short while later to check on me. He had seen me standing at the door, then disappear suddenly before the door closed. He was condemning and critical of her. She was crying. Sometime after that, she signed guardianship of me over to him and moved back down to Texas. A few weeks later we got the news that she had committed suicide.

When I’m dealing with my daughter and she’s refusing to do things like, take a shower, let me brush her hair, login to classes, do homework, or anything that isn’t playing Minecraft or drawing on her iPad I feel a rush of overwhelming feelings swirling around: anger, resentment, frustration, shame, sadness, hopelessness, helplessness. Then she starts laying on the insults and declarations of how horrible of a parent I am and how she loves her dad more than he loves me. If I attempt to remove her iPad, she lashes out at me physically – hitting, kicking, scratching, biting.

The roles appear to be switched with me as the mother. But, on a visceral level I don’t feel any more in control or that I matter than I did as a kid going through what I went through with my mom.

Maybe there’s a clue in that. Maybe it’s a hint that she wasn’t feeling in control or that she mattered. We don’t feel in control or that we matter so we do things that are about taking control and power from someone else, not because we want to feel powerful, but because we want to matter and if we don’t feel like we matter, we don’t feel safe. If I don’t matter to those who matter to me, then I don’t feel that my needs can get met. I’m supposed to meet her needs. It’s not her job to meet my needs. It’s not right or fair of me to resent her for this.

Is the resentment about her or is it about resenting that the person whose job it was to meed my needs and who I was supposed to matter too, oppressed and suppressed me instead of take care of me?

I know now that my mother experienced undiagnosed and untreated mental illness – likely Bipolar I with schizopherenic tendencies. She couldn’t help it and it wasn’t her fault. This knowledge and understanding gives framework and context, but, it doesn’t change the feelings and the child who needed protection and nurture still didn’t get protection and nurture. I struggle to protect and nurture myself and I struggle to provide that for my child.

UBC4/20 Day 14: Parenting from afar

At the beginning of this month’s challenge, I mentioned my youngest daughter, but, I haven’t said much about her. Since I’m having some big feels regarding her and my relationship with her, I figured I’d talk through it here. If nothing else, I’ll get some more Emotion Color Wheel practice in. I’m feeling sadness and love. Sadness about her not being with me and love simply because she’s my daughter.

Digging deeper, I realize my sadness a lot of things: distressed, melancholic, shameful, and hopeless. Exploring that more reveals that I feel agonized and hurt, depressed and sorrowful, regretful and guilty, anguished and powerless. That’s a lot of sadness that’s heavy on my heart. I’ll get to the whys in a little bit. But first, I want to explore the love more. There’s tenderness and longing. Those expand out to compassionate and caring, affectionate and sentimental. That love is all twisted and intertwined in the sadness.

The love is actually buried under the sadness in a lot of ways and I think that’s all tied to my childhood trauma and the mother wounds I carry. I know I have attachment issues. It’s very, very difficult for me to be physically affectionate. I don’t enjoy snuggling, hugging, and close physical contact with anyone. I never have. Please don’t hold my hand for more than a few seconds. I can give hugs, but, please don’t hug me. Don’t get me wrong. I love being with people and interacting with them, but, not in a physically close way. This social distancing thing and communicating via Zoom, Messenger, FB Groups, and texts are all fine for me. Much easier for me than being in a roomful of people.

But, I digress.

I’ve known about my attachment issues for a very long time. I’ve been acutely aware of it since my youngest daughter was born, a little over 11 years ago.
I decided to breastfeed. Great for her health and good for us financially. Except, that’s the only thing she would do if she wasn’t screaming or crying. She howled for 45 minutes after she was born and didn’t really stop for the next five months. She was constantly on a breast. Clinging to me. Burrowed against me. I wore her in a wrap around me because it was the only way I could get anything done. It was like being pregnant, only carrying the child on the outside of my body. My life was centered around her need to feed and have that comfort.

I hated it, but forced myself to do it because I wanted to give her that opportunity for attachment to me in ways I hadn’t been given with my mother and had been unable to give with my older children. So, I also decided to let her self-wean. Only, she didn’t really. She nursed until she was almost three. By then I had to cut her off. It took her a couple of years to stop asking for it. Part of the reason I let her nurse so long was because her dad, who she was very attached to, was a truck driver and took a long-haul over the road job and was gone weeks at a time. Then, after an incident between him and my teenage daughter, I moved out and got my own place for a couple of years, thereby limiting their ability to be with each other. So, nursing was the primary touch point for comfort and a sense of safety and stability I could give her…even though I hated it.

Her dad and I stayed separated for a couple of years, but, were still enmeshed with each other and I wound up letting him move in with me. By the time a year had gone by, I was either in an emotionally hyper-reactive state or in a near catatonic dissociated state in order to manage the depression without knowing I was also trying to manage PTSD and Bipolar Disorder (II) and not receiving treatment for it. Things came to a head on her fifth birthday and I took her and left three days later. I have not gotten back together with him, but, because of her and her issues, he’s still too much a part of my life and I continued to be psychologically and financially enmeshed with him.
It turned out that our little girl is on the autism spectrum. It’s hard to tell because she’s what’s considered high-functioning. That label implies that she’s less impacted by the spectrum issues because she’s highly verbal and more social than children on the spectrum are often characterized as being. I don’t think she’s less impacted. I think she’s impacted differently and I’ve had to fight tooth and nail to get her the identifications, diagnoses, services, and supports she needs.

Over the past six years, her dad and I have “co-parented.” In our case that means he got to have her with him on weekends, school breaks, and holidays, while paying for her needs and wants, providing my phone, and paying for electricity & internet. So, functionally, I was operating as single parent. I was the one to deal with all of the agencies, organizations, medical facilities, and educational systems. I was also the one who bore the brunt of her emotional/behavioral issues.

She got increasingly violent with me, both verbally and physically. I have been shoved, slapped, hit, kicked, scratched, and bitten. I have been called a bitch, told I am hated and that she wished I had never been born or that I would die like my mother and go to heaven. I was the one who dealt with the school when she would get suspended for tearing the classroom apart or physically attack staff and students. I couldn’t let her be around my grandchildren because she was very mean to them.

She wasn’t always like this. She never acted like this when she was with her dad.

Last Thanksgiving some serious things happened and my adult daughter’s family became homeless. At that time, my grandchildren were five, four, and two. I couldn’t see them living on the street or in a shelter. So, they all crowded into my apartment. My little girl’s behavior escalated again, until it reached the point where she attacked me and punched me in the spine. I couldn’t take anymore and I had her move to her dad’s.

That was just before we went to social distancing, then shelter-in orders. I’ve only seen her a couple of times since then and done video messaging a few times. I don’t know what to do or say that is meaningful for her. I miss her, or the idea of her and having a good relationship with her. At the same time, I’m relieved I don’t have to be in her presence 24/7. So, lots of sadness with bits of love sprinkled throughout.

We’re supposed to spend some time together on Friday. We’ll see how it goes.

UBC 4/20 Day 7: Avoidance, Fear, and Understanding Myself

I have a counseling appointment today, via computer. I really like this therapist. I met her fact-to-face just once after social distancing became a recommendation, before it became a government mandate… so, that would have been three weeks ago. I feel like she’s going to be good for me. I also think she’s going to be somewhat hard-nosed and won’t let me get away with not doing my “homework.” So, here I am, cramming homework I had all week to do, into a few hours before it’s supposed to get turned in. Just like in high school or college.

Turns out that this is exactly part of the homework I was supposed to be working on. Avoidance.

What am I avoiding, exactly?

Well, the questions she asked me to consider at our last session were about me identifying my space in the world and in my life. Not where I feel I belong, but the space that belongs to me, specifically in my own home. What do I need to work on taking back so that I can feel safe and secure? Why is there such a strong sense of avoidance? What does avoiding look like? What am I avoiding?
Believe it or not, I think tackling the questions on avoidance will be easier than the other questions. Of course, that’s also a way of avoiding examining the other questions. Right?

Aaaaand avoiding dealing with the avoiding. It’s been about an hour, maybe more, since I finished that last sentence. So, back to the question: Why such a strong sense of avoidance? I think this is the point where my “stream of consciousness” writing style may come in handy.

Fear. Fear is at the heart of avoiding. At least, I think that’s what it is. If that’s true, then, I need to figure out what it is I fear. In the context of the initial questions about space and figuring out how to take back what is mine and what I need to do to work on to taking it back, what is it my fear?
It may be two things. The first is realizing that I’ve seldom, if ever, completely had my own space, or my own place in the world. I don’t think I even understand what that looks and feels like.

I remember being a young child where a couch was my bed and the living room was my bedroom. After that, when I had my own room, it became to catch-all. Whenever my mother expected people to come into our home, all the accumulated clutter from the public spaces was moved into my room and seldom, if ever moved back out. I recall one Christmas I had been given a peppermint candy cane log – it was HUGE. If memory serves, I had carved out space for it on my dresser and I was looking at it from an angle that meant I was on the floor. I have a sense that was because the floor was the only available space and it was also where I slept. After that life fell through and we moved again, I may have had my own room for a few months before my mom and I moved to live with my grandmother. It was a small, one bedroom apartment. More moving. Then mom died, leaving me in my uncle’s custody. Another one bedroom apartment for my uncle, his wife, and me. I was 12.

Eventually, I had a room to myself, but, it never felt like it was mine or my space because I never really felt like I belonged, that I was part of his family unit. Three more moves over the next four years. Some of the time I lived with my uncle, some of the time I lived with my grandmother. Sometimes I had my own room, but, mostly not. Then, at 16, I ran away. When you’re a runaway, you really don’t get your own room. I lived out of cars and hitchhiked across the country with my son’s father, until he almost killed me in front of our two year old son. At 19, I was a single mom, with no employment history or proven work skills. So, there was no way to afford my own space. When I did afford my own space it was either studio apartments or one bedrooms that I shared with my son. Sometimes there were roommates.

During the times when I might have had my own space, I wound up helping other people out and giving them a place to stay…often for extended periods of time. Including now, when my adult daughter’s family became houseless right after Thanksgiving. Her family of five plus one on the way moved into my tiny two bedroom, one bath apartment. Even before they moved in, though, my space wasn’t my own because her younger sister, who I was partially co-parenting, but mostly single parenting, is autistic and at 10 years of age refused to sleep by herself.

So, yeah, I have no clue how to own and occupy space that’s just mine.

The second fear is that, if I push the issue and push my daughter’s family out, I’ll be abandoning them, abandoning her, the way I was. Well, maybe not the way. After all, my mother’s undiagnosed, untreated mental health issues are what caused her suicide. But, she left me alone and, even as a 50 year old woman, there are times when I wish I had a mother to turn to. I don’t want her to ever feel that I won’t be available when she needs me and, right now, she needs me.

Finally, the third fear is intertwined with the second fear. I’m afraid of losing relationship with her and my grandchildren. Six years ago, my relationship was so broken with her that I had to find out from an old family friend that she had gone into premature labor and was in the hospital. She didn’t want me there. Now she’s about to give birth to baby #4. I don’t ever want to be in a position where I am not wanted or allowed to be in my daughter’s or grandchildren’s lives again.

Well, that’s enough processing for now. I know this was long. Thank you for sticking with me until the end.

It’s that time again! April 2020 Ultimate Blog Challenge

First, let me start by saying, “This is NOT another pandemic blogging projecct.” When I first signed up for this month’s challenge, I was asked what my goal was. My response was to state that I want to write 30 posts that have nothing directly to do with the pandemic. I may refer to it, but, I won’t be discussing the politics of it, the projections, or a daily accounting of my time spent “sheltering in.” What I write about may not wind up being as interesting or light-hearted as it could be in this time of stress and fear. But, it is intended to be a different thing altogether.

Now that we have that out of the way, you may be wondering, “Lillian, what ARE your 30 blog posts going to be about, then?” The answer is, “I don’t know for sure.” Sounds strange, I know. However, I’m not a planner. Never have been. I’ve tried. Lord knows I’ve tried. I just don’t have it in me. Every time I create a plan, it falls through. You know the old adage, right? “How do you make God laugh? Tell him your plans.” Let’s just say that I tickle his funny bone whenever I attempt to make a plan.

What I do know is that there could be poetry or short stories. You might run into something like a devotional, refering to biblical scripture. However, it will likely be a combination of me processing my mental health stuff or discussing mental health stuff. It also might be a record, of sorts, about my search for employment and, hopefully, me adjusting to a job. For the moment, though, let me introduce myself, for those who don’t know me or who need a quick catch up.

I’m a 50 year old mom and grandma. My children are currently 11, 26, and 33. My grandchildren (by the 26 year old) are currently 6, 5, 2, and due in two weeks. The 11 year old experiences the world through the higher functioning end of the Autism Spectrum. Due to her behavioral issues and my mental health issues, I recently had her go live with her father. I have all kinds of feels about that and some of that subject may show up this month. My 26 year old daughter is pregnant with baby #4. Her family of five, soon to be six, are living in my tiny 2 bedroom apartment, along with a dog and a cat. Anecdotes and feels about things related to that may also appear here. As for my 33 year old, he’s married and living with his wife, doing his own thing. There will proably be little reference to him, unless it relates to our history.

I also live with a bipolar brain that has been shaped by trauma. So, I have diagnoses of Bipolar II Disorder, PTSD, Depression, and Binge Eating Disorder. I just started weekly therapy with a trauma therapist. I was blessed with a gift of 6 – 12 months of this therapy by my faith community, otherwise known as “church.” So, there could be a LOT of me processing through my mental health challenges this month.

I haven’t been employed for a little over seven and half years, except for a recent, very brief stint with H & R Block. I took their income tax preparation course last fall, and barely survived it. I also took a three month Peer Support Specialist class, followed by a 10 week Peer Wellness Specialist class, which I completed on Friday, March 13th. The last day I worked at H & R Block was March 16th. I have to obtain my Peer Wellness Specialist Certification through the OHA – Oregon Health Authority before I can actually get a job doing that work. Right now the OHA is pretty occupied and they already took 3 – 6 months to process those applications before the current health crisis. In the meantime, I need an income. So, I applied for a grocery store position, thinking it would be a good bridge job while I go through the hurry up and wait process. But they decided to “pursue other applicants.”

On Monday I applied for a Direct Care position in a mental health group home situation with the community behavioral health organization I took my Peer training through and have been receiving services with for almost a year. The next day, yesterday, they did a phone interview with me. I have a video interview with them today. Wish me luck.

This month promises to be quite the journey, or at least the first chapter of this new book in my life. I’m happy to have the company while it gets written. Thank you for joining me.

Special Needs

Ableism is discrimination and social prejudice against people with disabilities or who are perceived to have disabilities. Ableism characterizes persons as defined by their disabilities and as inferior to the non-disabled. ~ Wikipedia

I made the mistake of reading comments on an Instagram post in favor of Alexandria Ocasio-Cortez. They were mostly positive. But, there was one naysayer who stood out for his initial lack of vitriol. He was just mildly snarky. But, it was like he had committed some heinous sin, instead of posting a disagreement rooted in ignorance.

He was immediately under attack. Mostly the responses remained as snarky comebacks. However, one of them made me cringe.

It sounds like your boss is good at hiring people with special needs.

I couldn’t scroll past without addressing it.

Back in the day, the insult used was, “retard,” frequently accompanied by a physically mocking action. Much like 45’s mocking actions regarding a reporter who experiences a physical disability.

Another one is, “riding the short bus.”

However you frame it, it’s showing a prejudice toward people with disabilities, especially intellectual ones.

How about how mental health challenges are referred to?

What are you, crazy?

Man, that was INSANE!

She’s so bipolar.

That one’s not right in the head.

Or the fact that so many movies and TV shows portray mental health patients as dangerous killers and all the shootings being reported as someone with mental illness, before an evaluation can be done?

The stigma and prejudices against people with physical, developmental, and mental disabilities is real and insidious. Just as we need to recognize, call out, and address racism, in all its forms, sexism, genderism, and sizism, we need to call out ableism.

It isn’t about political correctness, it’s about human rights.

For more on my perspective on ableism, go here.

Ramble on

A lot’s happened over the past two days and even more is happening today.

On Monday, I attended the orientation session for the Health Careers NW study. It’s a federal research study to determine if providing vocational training in healthcare fields and employment support for low-income people receiving public assistance can help them attain a greater degree of financial self-sufficiency…uhmmm yeah!

In order to move forward with that process and when I, eventually, obtain a job, I’m going to need to show my Social Security Card. I don’t have it. Rather, it’s (hopefully) lost and buried somewhere in the depths of a very large box full of boxes and bags of papers…and by very large, I mean a moving box sized to carry several oversized pillows and lightweight items.

Trust me when I say there isn’t enough time or physical space for me to go through it and continue doing the job readiness, mental health recovery, and physical health activities I’m doing.

So, the Employment Specialist who has been working with me through the Social Security Administration’s Supported Employment Demonstration (a different federal research study to determine if people who have been denied Social Security Benefits for disabling conditions can successfully be transitioned back to employment with Employment Supports, Mental Health Case Management, and Physical Healthcare Supports…uhmmm yeah, again!) has been helping me get to and from some of these employment readiness activities I’ve been doing. She went to the orientation with me.

We decided to try to get to a Social Security Office afterward. However, she was on a tight schedule and had already agreed to take me to a store where I could exchange my empty 5 gallon water bottles – it’s too hot to go without decent water. The first place we went was out of water. So, we had to go to a different store.

While walking into that store, I tripped on a curb and went down on my left knee, then rolled onto my back. I managed to avoid going down too hard, thankfully.

By the time the water got replaced, it was too late to go to the Social Security Office. So, we agreed to go Tuesday…fully expecting at least an hour wait. Lo and behold, we got there and I had less than a 20 minute wait! 😮

I had tried to sign up for the NCRC, which I talked about here. However, I couldn’t just sign myself up. So, I called and spoke to the gal who’d led the Health Careers NW orientation on Monday. Now, I have four hours of testing to do today.

Not looking forward to it.

I tried to do math prep yesterday. I realized that geometry will kill my math score…which will kill my overall rating, since the lowest score determines the final rating.

The perfectionist in me is quite unhappy with that thought. However, the realist in me knows what’s what and that, ultimately, geometry is not a part of my career path and that my other abilities will speak for themselves when the time comes.

So, I decided not to make myself crazier with the math prep.

Later, I had a Volunteer Orientation at NAMI. NAMI is the National Alliance on Mental Illness. It’s a nationwide, peer driven organization offering support, education, and community engagement for those experiencing mental illnesses and their families. Since I want to get into peer work, this is my next logical step.

There are several opportunities for me here: teaching classes, as long as I’ve already taken them myself; Community engagement – speaking at schools, organizations, and businesses about my lived experiences as both a person living with mental illness and a parent/family member of others who have experienced mental illness; operations support, which will have me exercise my office and writing skills.

I start next week. My first volunteer project will be working on updating the local resource guide. The current one is two years old and things change.

I’m really excited about this next phase.

On my way home, I experienced another knee injury. I’m afraid this one was a bit more severe than the first. I’m really hoping that the pain subsides without me having to make another medical appointment.

What happened?

A slightly out of it man got on the bus, chose not to sit down, and neglected to hold himself steady. So, when the bus started to move, he came toppling down onto my lap like a felled tree, his shoulder gouging into the top, inside of my knee, above and to the side of my kneecap.

That’s the leg with the nerve entrapment in my foot and the same knee I’d fallen on the day before. So, now I have some radiating pain going down into my foot. Yay.

Since I’m hurting, sleep is elusive. Which means, I’ll be going into my tests sleep deprived and in pain.

Wish me luck.

I got nuthin’ – free write

I had no cohesive thoughts about what to write for today’s post, day 16 of The Ultimate Blog Challenge. I know daily prompts are emailed, I just don’t get them, for some reason. So, what you get is a brain dump. Continue reading at your own risk. I have no idea what’s about to come out.

I’m on new meds…rather different meds. At least I’m supposed to be. I keep forgetting to take the iron. Liquid iron is an interesting thing. I need to figure out where to put it to where I’ll most likely remember to take it.

Or, maybe I forgot to take it last night because I subconsciously don’t want to take it because I was nauseated most of the day after taking it for the first time the night before.

Anyway, different thyroid med, different iron med, and brand new vitamin D. These changes are supposed to help mitigate the fatigue I’ve been experiencing.

Sleep would help with that, I’m sure. But, 30 years of disrupted sleep catches up to you.

Yes, I have sleep apnea…but not 30 years ago. Yes, there’s often a 10 year old Cling On, in bed next to me…but not for the first 20 years.

I was diagnosed with fibromyalgia when I was 20, and one of the symptoms the doctor used to identify it was sleep disturbance.

My hands are tingling from holding the phone…yes, I mostly use my phone to write my blogs. That’s because I usually write in the middle of the night, when it’s dark and I can’t sleep, but the child who cannot sleep alone is asleep next to me. Also, for about three years, I didn’t have a computer. Now that I have one, I forget about using it a lot.

Anyway, the numbing and tingling has been happening for as long as the sleep disturbance has been a thing. Yes, I have diabetes, but, I wasn’t even pre-diabetic when I was 20. It was another symptom used to diagnose fibromyalgia…as was the fatigue, and seemingly rootless aches and pains.

My research found that often people with a history of trauma developed it. I also found out that, at the time, it wasn’t usually diagnosed until someone was in their 40’s. Of course, I didn’t do the research until 10 years after the initial diagnosis.

Why? Because I was a single mom, in college, trying to change my life and my destiny. So, I forgot about it. Poor memory is another fibromyalgia thing. Except, it’s also a trauma thing.

Something I’ve noticed is that my fibro symptoms have greatly diminished over the past five and a half years, as I’ve been in therapy and actively working on my mental health, including getting a diagnosis of and getting treatment for PTSD.

I wonder if, in my case, maybe the fibromyalgia is primarily trauma-based. I know that isn’t always the case for everyone who is diagnosed with it. I mean, I’d experienced plenty of trauma by the time I was 20: sexual, emotional, psychological, and physical. It wasn’t all at once and it wasn’t the same people for each kind.

It makes me pause and question if I had been diagnosed and treated for PTSD back then, would I still feel like a mental and emotional basket case most of the time. I mean, what’s past is past, I know. I’m just curious if there’s a connection between trauma and fibromyalgia, then couldn’t doctors screen for trauma and refer for mental health services.

Ok. I didn’t expect that. Now, I’m sleepy again and dozing off. So, I’ll close for now.