autism

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.

Scattered Goal Setting: Just Do It

I suck at structure and routine. It’s my kryptonite.

Every day planner or daily journal I’ve ever had, was lucky to be utilized for more than a couple of weeks. Organized goal setting? Forget about it. I’ve tried. I’ve taken classes. I’ve been mentored. I’ve learned strategies and used templates. Nothing sticks. It’s just beyond me.

Maybe it’s a Gemini thing. Maybe it’s a Bipolar thing. Maybe it’s a PTSD thing. Whatever it is, it’s a ME thing. I have felt like a failure because, no matter how hard I try or how much I want to, it’s just not something I have been able to achieve and maintain. I’ve had people who have done their best to teach me and guide me into doing this, give up on me, with the false belief that I am not interested in growing and achieving success . . . or their idea of success.

I’ve had mental health advocates and therapists explain and teach methods and techniques, stressing the critical importance of structure, order, and routine in the recovery process. Service providers for my daughter, who experiences the world through the autism spectrum, have campaigned for me to do these things for her well-being.

I’ve tried. I really have.

I’m coming to a realization: I’ve been doing the things, just not in recognizable ways. I have a loose routine and keep a schedule, sort of. Every appointment, class, and commitment goes into my phone’s calendar. If it isn’t in there, it doesn’t happen. So, I show up to just about everything I say I’m going to. There’s one thing that’s a constant. Every Sunday, I go in early to help set up for the worship and teaching service with my faith community. The rest of the schedule varies from day to day and week to week. But, it’s all in my phone.

My personal care routine revolves around those appointments. The ADLs (Activities of Daily Living): specifically the personal hygiene ones revolve around the things in my phone. If there’s an external commitment where I’m going to be around people, then it happens. If it’s just me, myself, and I staying home . . . well, it may or may not happen. I’m working on that. Definitely room for improvement. Baby steps.

As far as goal setting goes, I’m not so SMART. Do you know what SMART goals are?

  • Specific
  • Measurable
  • Attainable
  • Relevant
  • Time-based

Written down, with steps and actions laid out, in small, manageable bites.

I’ve tried. Haven’t been able to keep up with it. I get overwhelmed with the planning, my brain starts spinning, I lose focus, and get lost in the details.

Here’s the thing. I’ve been recovering anyway. Guess what else? I’m on the right path and trajectory for what I want to be doing.

I decided that, after five years of focusing on my mental health recovery and eight years of working to stabilize my youngest child, who is on the autism spectrum, that I’m probably ready and able to hold down a job. At least, I hope I am.

Get a job. I didn’t write it down, exactly. I’ve written about wanting to get one, but, it’s not in a diary, journal, or planner. I got a little specific – Peer Support Specialist. Not written down, but continuously on my mind.

I didn’t write an action plan. I just decided that, after seven years of not being employed, I needed to refresh and update my office computer skills. After all, there really isn’t a job in many industries that doesn’t require knowledge and ability to use some computer skills to document the work being done. So, I went where I knew to start the process because it’s where I’ve started in the past.

There was a calendar of classes and for updating those skills. It also had job readiness activities listed: Workshops for Resumes, Job Search, Interpersonal Skills, Interview Skills. So, I signed up for all of them and plugged them into my phone calendar as appointments, so they would happen. No concrete plan going in; just find out what was being offered and take advantage of it.

I figured if I want to do Peer Support work, I should probably continue and increase my participation in mental health group programs. So, I signed up for NAMI’s Peer to Peer class. Through that process I discovered they have a training for the job I want. I applied, but didn’t get in. Since I hadn’t planned and counted on it, not getting in didn’t derail me. I just looked at the reason I didn’t get in: I needed to be currently engaged in a job or volunteer position doing the work. When a volunteer opportunity presented itself, I jumped at it. No planning. I just did it.

I heard about another training opportunity and called about it the next day. Heard back the following day and discovered I have less than a week to submit and application and a letter of reference. I happened to run into my therapist while waiting for one of the groups and asked for the letter. We’re doing it later today when I see her for my appointment. I submitted the online application yesterday.

The point is, that I haven’t done any planning. I just decided and followed through with steps that made the most sense in the moment they presented themselves. I’m not going to lie and say that none of the things I have been taught and told about goal setting, time-management, planning, and organizing haven’t helped the process along. They absolutely have. Just not in ways most recognizable to the gurus of goals.

If you’re anything like me and planning for a goal or developing a structured routine don’t work, then, as Nike suggests . . .

Just Do It.

 

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?

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.

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