Too few spoons…

As an Autistic adult, I sometimes ignore my limitations and start borrowing spoons from upcoming days. For example, this past weekend I spent a large amount of time shopping for work clothes. On the second day after a few hours in the mall, my sensory issues were at a high and I was in such autistic sensory overload I felt I might pass out from the stimulation. I then started an 85 hr shift at work. The problem with this neurological phenomena is you crash, and crash hard. Your body becomes weak and sore, your mind is sluggish and depressed, and your emotions plummet down. All the negativity you could feel bubbles up, and you’re plunged into a very real and very severe depression that you recognize, but can’t just snap out of.

I’m there. It’s like an overwhelming existential crisis where you over analyze the world around you looking for light to bring you out of the darkness you’re enveloped by. The lack of understanding creates an overall sense of insecurity and inability to feel like you belong to the world around you. Catching my own eyes in the mirror is frightening because you can’t seem to recognize yourself because you’re a shell existing in a state of extreme solipsism, a philosophical crisis.

Of all the aspects of Autism, this is the most debilitating. It is a constant reminder that no matter how much therapy you’ve had, how many coping mechanisms you’ve employed, and how high-functioning you may appear, you’re still chained to a neurological abnormality that dictates your life beyond control. That the world around you is a constant trigger.

(The spoon theory is a disability metaphor and neologism used to explain the reduced amount of energy available for activities of daily living and productive tasks that may result from disability or chronic illness. “Spoons” are a visual representation used as a unit of measure used to quantify how much energy a person has throughout a given day. Each activity requires a given number of spoons, which will only be replaced as the person “recharges” through rest. A person who runs out of spoons has no choice but to rest until their spoons are replenished.)

She’s functioning…

Hello readers.

It is not hard to see I’ve neglected this blog for quite a while. If you’ve commented and I’ve not responded, I apologize. If you’ve reached out to me on my Facebook and I’ve been radio silent, I profusely ask for your understanding and forgiveness.

I guess I would like to preface this by saying, functioning is a constant struggle no matter how well you seem to appear on the outside. I am going to write a little timeline to condense this time I’ve been away, and I may choose later to expand on the events in later blog posts.

• I got divorced November 19th, 2015.

To say we started having problems in May of 2015 would be an understatement. Our marriage was problematic before we said “I Do”, and the slow unraveling of my psyche was in large part due to this. What started out as simple emotional abuse slowly led up to a an event that could not be forgiven or forgotten. In the middle of an argument about the most asinine thing imaginable, something so minuscule that even to this day I could not recall the subject, my husband walked up to me and spit in my face. Not only that, he told me that “when I leave, I hope you kill yourself.” Now, as you can see, I am alive. That night I did escape to a hotel room, but was pulled back with promises and empty apologies. We separated in August of 2015 and the divorce was finalized in November. I am going to write a follow up post to this specifically about my marriage and its implosion.

• A few days before my divorce, my furbaby died.

Spanky was my child. When he was born, I removed the amniotic sac and hand-reared him as he was the runt. He was as connected to me as one of my limbs and had been with me for almost six entire years. He was my emotional support, my love, and even to this day I cannot speak of his death or him for more than a few minutes. My ex had taken our other dog, Kennedy, in the separation. He never wanted her in our marriage, did not train or care for her, but insisted he was to have her. I was left husbandless, childless, and with little connection to the familiar.

 

• I changed jobs.

In July of last year, I began working at a non-profit as a Direct Support Professional with low-functioning adults with intellectual and developmental disabilities. I worked with all types of disabilities, but they brought me in specifically to work with the adult non-verbal autistics. I loved my job, but it did not pay a wage that could support my newly single lifestyle and the chaos of everyday had triggered my sensory issues to such a level that a few weeks before I quit, I was in a Dr’s office sobbing and begging for pharmaceutical relief. Spoiler alert…I didn’t need the pills. I changed my jobs and have been working really hard on my coping skills in the meantime. During that job, I began doing in-home caregiving with a participant. Now I am a full-time caregiver for a few different clients with a spectrum of disabilities and ailments. I may not be able to help myself all the time, but I am AMAZING at helping others and have found my true calling.

• I will be living alone in two months.

For the first time in my life, I will be living in my very own apartment. By myself. No one helping me. I will have reached a level of independence I never thought possible, and I can’t wait to share it with you all.

There have been many times I wished I could turn to this blog and vent, but I decided to wait until I had a clear head. I’ve missed you all, and wish to reconnect with my readers and reach some new ones. Until my next post…stay happy my friends.

What do you mean I can’t stay in my house forever?

I’m a freaking out right now.

Christmas is a difficult time for me, mostly due to the social expectations. I don’t enjoy the gift giving and dread the receiver not liking what I chose. I dread receiving something I don’t like and having to pretend I do, mostly because there is not one want or need to be had at this very moment.

I hate that I now have two Christmas’ to suffer through. I hate the Christmas music my Dad plays and the fact that the holiday I did not celebrate for most of my life is now a huge production for my step-niece who tosses gifts aside as if they are the wrapping around a spork. I don’t get along with my step-sister, and I am dreading having to try my hardest to not make her boyfriend feel like I don’t like him.

Silence should be treasured, not perceived as being sad or angry.

Fuck Your Functioning Labels

Hello readers,

Sorry for the hiatus; on a positive note, this a perfect time for a post about the concept of “functioning” regarding Autism.

*I will no longer refer to nonAutistics as NT or Neurotypical as I feel like this is almost becoming a slur. 

As mentioned before, I do not support functioning labels. I believe they are insulting to those who are perceived as lower functioning, and dismissive to those who are perceived as higher functioning. There is a great divide in the Autism community that is perpetuated by these ridiculous labels. Recently, I saw many of the opinions on a Facebook thread with a video titled “Do you believe the spectrum is too wide”?

Pretty vitriolic “support”, am I right?

Studio Apartment.

Husband is watching the new X-Men movie, which is just unnecessarily loud. The dialogue is super quiet so he turns it up, but the action scenes are a nightmare of clustered noises.

Someone decided that at this point in the movie, they would layer the music with the sound of a heart beating, and people screaming, and guns popping, and various sound effects.

I struggle because I know he really wants to watch the movie, but I also feel like clawing my ear drums out.

I need to buy some noise-canceling headphones or earplugs that do not hurt my ears soon. Suggestions welcome, preferably an earphone that can be worn in the classroom without being too obvious.

All I hear is that fucking heart beat.

Forgive me.

I might be quiet for a short time.

I am finding it hard to accomplish much at the moment and my concentration is nearly nonexistant.

I am exhausted and my mood is reflective of that. Combative and overwhelmed.

Everything is too much and I so wish this semester was over with.

On another note: It really excites me that some people reading this are not from the United States. I love that I can comment on someone’s blog and they don’t even have to know English!

It is really fucking cool. HELLO EVERYONE FROM SWEDEN, NORWAY, ECT. *wave*

Was I a burden on my parents?

I think I might do a video tonight, but I wanted to write a short post today. I’m not sure my thoughts are quite coherent or well structured at this moment, so it might come across as rambling. I apologize.

These comment snippets were grabbed from discussions on Facebook in regards to two videos, this one and this one.

As an Autistic adult, it can sometimes hurt to be a part of these communities. On one hand, your opinion is quickly dismissed because “you must not have a child with Autism, like me” when they don’t know you have Autism. Trying to have an opinion about how an Autistic child is being raised as someone who was an Autistic child is next to impossible in these communities. On the other, you get this weird glimpse into how parents feel about their children.

To clarify, there are comments posted from parents of Autistic children and Autistic adults themselves who disagree with what was happening in the first video, and the reactions to the second.

When you read some of these, and look back to your own childhood, it can become a bit depressing. I did not have a mother who loved me, and I wonder if my glitches just pushed her further away.

Having me as a child was something to endure? Having an Autistic child is heartbreaking? I was a challenge? Autistic children are manipulative? Autistic children thrive off of any kind of attention?Contemplation of these thoughts can be confusing. Is having an Autistic child a source of grief?

Furthermore, as it has been mentioned before, the line of who has the disability has become extremely blurred. Does the Autistic child have the disability, or is the parent disabled by their Autistic child. YOU HAVE NO CLUE WHAT IT IS LIKE HAVING AN AUTISTIC CHILD. MY CHILD WAS NOT BORN NORMAL AND THEREFORE MY LIFE IS THAT MUCH MORE OF A STRUGGLE. 

What about the gem regarding “high-functioning” Autistics being accepted more than low-functioning, and therefore “high-functioning” Autistics do not struggle as much. What?

When did someone who cares for an Autistic gain this ultimate understanding of what Autism is like and become the beacon of all knowledge ever about the subject? Was I just some difficulty that my parents endured?

Should parents of Autistic children be praised for not abusing or killing their child? For having the patience to deal with this “difficult” child that requires more than a “normal” child?

Sometimes these feelings creep into how I feel as an adult. Am I a shitty friend, wife, daughter? Sometimes I get upset because my dog cannot speak English because I want him to say I love you and assure me I am being a good mother.

I’m certainly not going to try and force my dog to magically learn how to speak my language. I can read his body language well enough to get by, why can’t they?

P.S. I am CFBC and my dogs are my children. Accept that.

Poetry break!

I once wrote a great deal of poetry. I loved writing, but my thoughts seemed so dark and depressing. As you can see, Poe really influenced my writing style, specifically The Raven.

I wrote this poem the day after my last hospital stay. I was sitting next to a fire pit and inspired to write this. Most of my poems were intentional, but after staring into the fire for what seemed like hours, I felt I needed to write this.

The Dying Fire

Sitting here just staring,
at the flames which once were tearing,
through the wood that now is gray.A soft light from embers glowing,
as the smoke continues billowing,
signals of a brighter day.

The warmth now is fleeting,
all light slowly depleting,
as the darkness creeps in slow.

Wrapping around my body,
with every intent to disembody,
with an emptied bottle of Merlot.

Every sense now is numbed,
I have finally succumbed,
as my soul leaves the skin.

Floating up into the ether,
thoughts becoming bleaker,
there is nothing left within.

When is having a disability a reason, not an excuse?

This post does not go into the medical vs social model of disability. When I talk about disability, I tend to come from a scientific standpoint. Blame the fact that my education and career choice center around science. I support those who recognize the social model of disability, but my topic doesn’t do much to clarify my thoughts or stance. Please don’t misinterpret it.

The other night­­­­, my husband told me that since my diagnosis, he has never been happier in our relationship. We had struggled a good time before and after the wedding, and the beginning steps to the diagnosis were taken to improve our marriage. He expressed that my “glitches” finally made sense, and he understands me more. He is able to sympathize in situations that normally left him confused and hurt. More than anything, he accepts me and works with my limitations and weirdness.
If my husband can accept my disability, and therefore excuse my behavior when it can be deemed socially inappropriate or hurtful, why can’t that sentiment be extended to strangers who also suffer from a disability that is also invisible?

Merriam-Webster defines the word disability as:

I know I know. If you’re part of the Autism “community”, you probably frequently see things posted like, “Autism. It’s not a Disability. It’s a different ability”.

Ahem. Merriam-Webster defines the word ability as:

In order to be diagnosed with a disorder, like Autism, one must satisfy certain diagnostic criteria, of which are described as deficits in certain areas of functioning, or a barrier to the cognitive process. Autism is a disability. No amount of cutesy sayings will change that.

My child is more Autistic than yours.

I was inspired to write after reading this blog post, “Communication is more than words. It’s feelings, movement, emotion and so much more…“.

Her words confirmed my hesitation regarding the creation of this blog. She writes, “We (every single Autistic adult I know) want so much to be understood and seen as valuable voices of experience and advice for parents of Autistic children. We don’t want the next generation of Autistic people to grow up as so many of us did (or didn’t) whether we were diagnosed (or misdiagnosed) or not. We want better. We know we deserved better, but there’s no use crying over spilt milk, so we passionately endeavor to reach out to the adults currently parenting Autistic children. But the sad part of this is that most of these parents want nothing to do with us. They say we are not like their children. They insult us with ableist comments. Some make threats. Their words are cruel, and they hurt. They say, “the fact that you are even capable of typing means that you are not at all like my child. My child will never speak, My child will never type. My child will never (insert anything here- they truly believe their child will never do anything)”.
When I was researching Autism during the diagnostic process, I became aware that there is a war in the community. It seems to me that there are parents of Autistic children on one side, and adults with Autism on the other. If you can type coherently, you are not Autistic. Your struggle as an Autistic adult is no match for the struggles of the parent with an Autistic child.