Thoughts on Growing Up With Autism

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This post will contain a collection of short journal entries I wrote recently about what it was like emotionally to grow up with autism. These thoughts specifically dealt with bullying and (for me) the most confusing time of adolescence, which was middle school and the beginning of high school. By the last couple years of high school I had figured some things out and learned how to “pretend” to fit in a bit better, even though deep down I still felt like an oddball.

Here goes:

I hated always being the butt of the joke – even among friends. I was naive. I was gullible. I was trusting. Too many times I was set up for humiliation or embarrassment.

In an effort to avoid this embarrassment, I quit trusting anyone. I quit taking anyone at their word. I became suspicious. I struggled to identify sarcasm, so I started assuming ALL was sarcasm unless I knew someone well enough to tell the difference. 

Due to this struggle with recognizing sarcasm, how many “mean” comments did I take to heart that were meant in jest? How many cruel words that cut me to the core, were never even meant to be cruel? When boys would say they liked me and I would take it as them mocking me and choose to ignore them or laugh at their “joke”, did I instead end up hurting their feelings in an effort to save my own? 

Bullied for my weight during middle school, accused of having a lack of “feeling” or frustrating others who thought I didn’t care about anything because I suffered from selective mutism under stress, constantly feeling reminded that I wasn’t “feminine” enough – this was much of my teenage experience.  

The common thread throughout was that I unknowingly made myself a target for abuse. The way I dressed. The way I talked. The way I acted. I was so desperate for acceptance and approval, but I reached for them in ways that were socially unacceptable to those around me and ended up only painting the bulls-eye larger on myself.  

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I Survived the Birthday Party!

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Just a few of the leftover treats!

A few of you seemed like you wanted an update about how my husband’s birthday party went yesterday (if you didn’t read my post yesterday, you can find it here). Most of the really bad nerves happened before the party and on the way there, which is pretty normal for me. I had an IBS attack about a half hour before leaving the house (nausea, diarrhea, cramps – the whole shebang). On the drive to the party, I noticed my right leg was shaking pretty bad (a sure sign of anxiety), which made driving even more uncomfortable.

However, once I arrived at the school, it didn’t go too bad. Checking in at the front office wasn’t nearly as scary as I had imagined, although the receptionist was kind of grumpy. They had me stay in the office until the party was ready, as they wanted to surprise my husband. When they were ready, I joined the kids in my husband’s class and his assistants on their way back to the classroom from music class. We all got to my husband’s classroom and sang Happy Birthday to him and had some cupcakes. There was a ton of other food there as well – a huge assortment of candy, an amazing cream cheese peanut butter cake, chocolate covered pretzels, chips and salsa, and more.

Meeting my husband’s assistants (and a few other school employees) went ok. They were nice and friendly, although I did feel pretty shy. I had to ask my husband a few times if they were kidding or not when they said certain things, because I genuinely have a hard time deciphering whether people I don’t know well are being sarcastic or for real when they talk. One of the highlights of the party was meeting one student’s therapy dog. Meeting people fills me with anxiety, but meeting animals is always pure joy! I also got a couple hugs from my husband’s students, which was sweet.

After the party I was definitely relieved to get back home, but proud that I went. I know it meant a lot to my husband, so it was worth it.

Birthday Party Anxiety

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Today is my husband’s birthday. At his work (he teaches special education), they are holding a special party for him this afternoon and his coworkers reached out to invite me. I am going to go, but I must admit I am nervous. I’ve never actually met his coworkers since they are fairly new, so that is a little intimidating to me (having to meet them all at one time).

For some reason, I am super nervous about having to go to the office to check in as a guest…I know I am 35 years old and it is kind of ridiculous to be nervous about something so simple, but I am what I am. I am also worried about the drive, because it is about a 40 minute drive and that is way out of my comfort zone as far as driving goes.

I must admit when I first heard about the party, my first instinct was to say I couldn’t make it. Anxiety is a powerful force. But in the end, my love for my husband won out and I want to be there for him more than I want to be comfortable or free from anxiety. I guess love is an even more powerful force…

Why Doctors Frustrate Me – Trying to Get Testing Done

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I want to begin this post by sharing a horrible dream I had last night. I was sitting in row G of a live outdoor show (my dreams are pretty specific sometimes), when someone behind me threw up all over my head. It was disgusting! I still remember the smell and feel of the vomit as it trickled down my face and hair. Ick! By the way, how do you “smell” things in a dream? I don’t know, but I sure did!

Ok, now that I got that off my chest, on to the main topic of this post. I am frustrated with doctors. Why? Because time and time again, I have had to fight to get testing that I feel is important, because many doctors tend to think I am just being a hypochondriac or overly anxious when I tell them I suspect a particular diagnosis.

However, time and time again, I have been proven RIGHT when I finally got the testing. C Diff, MRSA, medication allergies, asthma, CFS, fibromyalgia, costochondritis, pancreatitis, Aspergers, bipolar…all of these are conditions I highly suspected long before I actually got diagnosed, and yet, I had to fight to even get them checked out because doctors thought I was just being paranoid.

The most recent testing I am fighting for is Ehlers Danlos (EDS). I meet the major and most of the minor criteria for the condition, but have been fighting to even get a referral for testing. EDS is often comorbid with high-functioning autism, so that is what first made me interested in the condition. I am positive I score at least 6 or 7 out of 9 on the Beighton Score (higher on the Brighton Score).

I guess I can sum up this post in one sentence: Why is it so damn hard to get a simple test done???

Autism Sensory Issues – Me vs. the Crickets

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Some of you will probably find this post funny (honestly it is rather amusing), but if you happen to be autistic, OCD, or have a sensory processing disorder, you may relate to my very real struggles here lol.

So….I am at war with the crickets. Every single night they seem to congregate outside my bedroom window and conspire to drive me crazy and keep me from sleeping. Their constant noise is maddening and sometimes enraging.

I’ve tried several strategies to deal with the issue so far:

  • Sometimes I just lay in bed and imagine stepping on them all and squishing the life out of them. Or I envision dog-size crickets that I blow apart with an assault rifle. Imagining their cricket heads exploding brings a momentary sense of satisfaction from the annoyance.
  • A few nights I have gone outside at around 2am (when I normally go to bed), and took a broom to try to sweep them all away from the area or sprayed bug spray all around the area. Unfortunately, one night it was raining and windy when I did the bug spray thing and most of it ended up blowing back in my face and I think I might have poisoned myself instead of them. I don’t know if any of my neighbors have seen any of these late-night confrontations, but if they have, I do wonder what they think…
  • Yesterday we went to Home Depot and got some outside insect repellent pellets to put all along the yard on that side of the house. Not sure if that will work either, but it’s worth a try I suppose. The crickets were still around last night, so it definitely hasn’t worked yet.
  • Before you suggest noise-cancelling headphones or ear plugs, please know that those things are sensory hell to me in themselves. I do not like the feeling of headphones and certainly couldn’t sleep with them in. Same with ear plugs.

And so, the war rages on…

Does Any of It Matter?

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Do you ever wonder if it all matters? I sure do. I try to be positive most of the time when I think about the things I do and whether they make a difference, but when I get depressed, the voices of doubt tend to get louder. They say some pretty mean things:

Are you just wasting your time writing and making art? Who really cares?

Why would anyone care what you have to say? Who do you think you are?

You try to support others, but do they even notice? Does it even help them?

You only focus so much on art and writing because you can’t keep a REAL job. 

Your own family never cared that much about you, why would anyone else?

If you died today, barely anyone would notice or care. Your funeral would be empty. 

You are selfish and everyone sees through you. 

You are a drain on your husband and society in general. 

I know these are very negative (some would even say abusive) thoughts, but when I am feeling low, they play in my head like a stuck record. By writing them out, I am hoping they will finally shut the hell up. Do any of these thoughts (or similar ones) ever haunt you?

 

Love for My Fellow Autistic and Bipolar Peeps!

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I just want to take a moment today to say that I love and cherish those in the autistic and bipolar communities. I know I may be extremely biased, but I find other autistic and bipolar people to be some of the most honest, creative, caring, and talented people around. I don’t want to bash neurotypicals or everyday “ordinary” people, but I often find them boring compared to others who share my abnormal brain neurologically or chemically.

I feel like no one can truly understand me or the struggles I deal with on a daily basis unless they share some of those issues. I am grateful when those outside of my reality try to understand what I go through and have empathy for myself and others like me, but some things have to be experienced to be fully understood. Here’s a special THANK YOU to all of you who make me feel less alone in this alien world!

Who Do I Want to Be as an Artist?

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Today I was inspired by a blog post from Judith over at Artistcoveries, in which she asks the question – Who do I want to be as an artist? I love thinking about stuff like this, so I wrote the question down in my journal and brainstormed my own answers. Here is what I came up with:

Who do I want to be as an artist?

  • Unafraid to experiment
  • Unafraid to offend
  • Unafraid of mockery
  • Confident in my creative abilities
  • Willing to share the good, the bad, and the ugly of my art
  • Use the materials I love, not feeling forced to use what is considered artistically “professional”
  • Confident enough to charge what my art is worth (probably one of the hardest parts of being an artist in my opinion)
  • I want to be loved and respected by other artists and art lovers, especially those in the autism, bipolar, and outsider art worlds
  • I want to create what I like
  • Overcome my fear of doing in-person art events (currently hindered by my crippling social anxiety)
  • Monetarily successful enough to rely on my art for my general income

Do you relate to any of these wishes? Who do you want to be as an artist?

New Blog Theme, TMJ, and Being Silly for Halloween!

Hi everyone! First off, I want to say that I changed the theme (appearance) of my blog slightly. I don’t know if you all will notice or not, especially if you read most of my posts on WordPress’s reader function, but for those who actually visit my blog address, I hope you like the changes. I thought it was a bit more visually appealing, especially for sharing art and poetry, which I like to do.

Yesterday was the first day since my wisdom tooth surgery I was able to get out and have some fun. We didn’t do anything major, just went out to eat (still having to eat soft foods, so we opted for pasta), and did some Halloween shopping at Goodwill, where I decided to try on a couple “spooky” accessories:

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It was fun just playing around and being goofy after being sick at home for so long. The surgery pain is much better, although I’m pretty sure that this whole ordeal has brought on a flare-up of TMJ (a jaw joint disorder), which I have had issues with in the past. It still hurts to open my mouth very wide, talk much, chew anything, or smile big.