6 Word Stories pt. 27

So it’s been awhile… And the worst part is, it’s not like I haven’t been writing my 6 word stories, it’s just that two weeks in a row, I bolted up out of a dead sleep at about 2am on Saturday morning realizing that I haven’t written a blog post. I then immediately fall back asleep, which is less than useful.

I’ve had a long couple of weeks. I started physical therapy, which makes my POTS flare, which means I’m ‘fall asleep sitting up’ exhausted. My heart rate is also in the 150’s which makes me feel like I’ve had 5 shots of espresso one after the other. Luckily, I found a glut of gardening shows on Netflix, so I can just lie on the couch and stare at the TV when necessary.

So with the whole ‘skipping two weeks of posts’ thing, I’m going to leave you with The Best Of March’s Stories. Thanks for reading!

  • I started today with negative spoons.
  • Oh where has my ambition gone?
  • So tired. I blame Daylight Savings.
  • A thousand earplugs are not enough.
  • After too much socializing, it’s naptime.
  • Just for today, I’m not overthinking.
  • It’s hard to describe my feelings.

Well there we go! My last few weeks in 42 words. Sorry for the missed week, but if you ever feel like you’re in 6 Word Story withdrawal, my Tumblr blog, 6 Word Autism is updated daily!

Hope you all have a great first week of Spring!

6 Word Story pt. 25

So I didn’t do a 6 Word Story roundup last week. In my defense, most of the stories would have gone something like ‘ouch, pain, naptime, where’s my ice?’, and that’s not exciting for anyone. What is exciting (at least for me!) is that I’m feeling a lot better. On Thursday, I didn’t use my cane for a whole day, which is a big deal considering I’ve been using it for almost 7 months. Fingers crossed, but it looks like this is one medical problem that will resolve itself!

No more surgeries as far as I know, so stay tuned for business as usual!

 

  • Post surgery tradition is a stuffie.
  • Self, platonic, and romantic are all love.
  • Nothing distracts me from the pain.
  • Nap like you don’t even care.
  • Rain rain go away. No. Seriously.
  • Smelling books is a sensory experience.
  • Today I walked without my cane!!!

 

Meltdown Embarrassment

Oh man, what a day.

Any day that includes a meltdown is tiring, but rarely am I as embarrassed as I am about the one I had today.

For some reason, sensory related meltdowns seem acceptable to me. My senses are being bombarded, I’m overwhelmed, and often in pain, so I find it completely understandable that my brain reacts so intensely.

This was not a sensory meltdown. Today I had my first IV saline infusion, and I’m kicking myself for not being able to predict what happened. I had to wake up early (strike one), I had to navigate a large medical complex (strike two), and I was going into a brand new situation (strike three).

I really thought that I had a handle on it though. I knew what was supposed to happen, and had been mentally practicing what was going to happen.

This is where everything went wrong.

First, they were running late, and I had to sit in the waiting room for more than half an hour. Secondly, the first nurse to check my chest port thought it was warm and pink, so she poked and prodded at it, and eventually called over another nurse, who also poke and prodded. After that got sorted out, they informed me that since I was a new patient, they had to run the IV at a liter every two hours, instead of one an hour like I was expecting. I’d been planning to be there about two hours, and suddenly it turned in to four hours. After all of that, it turns out that my doctor had written the orders wrong, and we’d have to change plans for future infusions until it was sorted out.

This was when I started melting down. After the waiting, and the touching, and the change of plans, my brain couldn’t hold it together any longer. I started ranting at my wife. She helped me keep my volume under control, and to not blame the nurses for things that they couldn’t control. After that, I lost my words. Everyone was asking me questions and all I could do was nod and try not to cry. My body started stimming without my permission, my extremities started shaking rhythmically, and my head bopped violently to invisible music. And I couldn’t make it stop.

Thank god my wife was there. She communicated with the staff for me, and helped them contact my doctor for the correct orders. She told my nurse that we were going to cut the infusion short, and stop after one liter of saline instead of the two we had planned. She also had them reschedule me for later in the week. After all of this, she got me out of there.

I was so embarrassed.

I have non-sensory related meltdowns so rarely anymore that I kind of thought I had moved past them. I think I have a sort of elitist view of myself that says that since I’m so self aware, I should be above this sort of thing. I’m embarrassed about this too.

I talk so much about Autism Positivity, and I totally believe what I say, but I think that I have to remember that it doesn’t matter how smart a person is, or how self aware, or if they’re well prepared or have coping skills, sometimes meltdowns happen. They happen to all of us. And they’re nothing to be embarrassed about.

Even so, I’m really hoping that next time goes better.

6 Word Stories pt. 20

Sorry guys, this weeks stories are a little medical heavy. With spending New Years Day with a stomach bug, and my surgery coming up this Tuesday, I’ve got a bit of a one track mind. I’m excited though, once this chest port gets up in, I won’t have to have one find a vein in the arms (if they’re lucky) or my hands/feel (if they’re not). The site has to be kept incredibly clean in the beginning though, and I think that’ll be a sensory challenge. Wish me luck, friends!

  • Hopefully surgery is easy and successful
  • I invited someone over. On purpose?!
  • The fabric store is my favorite!
  • Afraid surgery will be sensory hell.
  • Stomach flu is bad for Autistics.
  • Peeling is fun until you bleed
  • I ran out of samefoods- help!

Can You Relate?

I run my hands over something soft

Something bumpy, something smooth

There’s no describing how good it feels

Can you relate to that?

 

I’m in a place that’s much too crowded

Too much noise, too much light

My senses hurt me, overwhelmed

Can you relate to that?

 

Engaging with my favorite things

Special Interests, special joy

Makes me want to jump and flap

Can you relate to that?

 

Talking to people I do not know

Try to smile, try to listen

Being polite is a social requirement

Can you relate to that?

 

Accepting that I’m a bit different

Always have been, always will

I’m starting to love who I am

Can you relate to that?

5 Good Textures and 3 Bad Ones

I don’t know about you, but I’m a sucker for a satisfying texture. Whether it’s squishy, or plushy, or smooth, or nubbly, I want to touch it. My wife says that I see with my hands, in the sense that oftentimes looking at something isn’t enough, I have to touch it to get a good sense of it. There are hazards to touching everything that I see. Some textures are just bad, and sometimes I can’t tell they’re going to be bad, so I get surprised. Let me tell you, it’s a terrible sort of surprise.

So, as a bit of a Public Service Announcement of Textures, here are some of my favorites,  and a few that are sensory hell.

5 Good Textures

1. Smooth Rocks- If rock hunter were a profession, I’d definitely be at the top of the field, mostly because I’m on the lookout for good ones wherever I go, because smooth rocks just feel so good. Whether I’m scoping out landscaping or taking a walk in the park, if I see a rock I like, I’m going to pick it up. I’m probably going to keep it as well. Their weight, plus their texture, plus how they always feel cool no matter how hot it is, makes them one of my favorite things. Very decent river rocks can also be obtained at the dollar store, but they’re slightly less satisfying without the hunt.

2. Soft (Flannel/Fleece/Minky) Fabric- I feel like fabric was everyone’s first stim toy. Even neurotypical kids love soft fabrics. They pet and and rub them on their face and bring them everywhere. Granted, most kids grow out of that, and I didn’t, but that’s ok with me. Some of my favorite fabrics are flannel, fleece, and that silky soft minky fabrics that baby blankets are often made of. If I am at home, I am surrounded my favorite fleece blanket, my corduroy elephant, and my flannel marble maze. All of these textures are so comforting, and so stroke-able. And I definitely only rub my face on them at home.

3. Dry Rice/Beans- If the soft fabrics from above were comforting, dried beans and rice for me are energizing. There’s something about all the individual  pieces being the same size, they fact that they’re smooth, and the noise they make when they’re played with that make them so satisfying. The only downside, for me at least, is that I have to have play only and eat only types, because apparently no one appreciates me using their food as my own personal rain stick.

4. Running Water- This one is full of contradictions, because I hate being wet. But there is something about putting my hands, and only my hands, mind you, under moving water is an almost mind blowing experience. It takes me outside of myself, my brain is quiet and everything kind of falls away. It is because of this that I love fountains. I have favorite fountains all over the city, which I make an effort to visit regularly. For some reason, tap water and washing my hands just isn’t the same.

5. Paintbrushes- Have you ever run a paintbrush over your hands? It’s heaven. The bristles are silky soft, and they give just enough pressure to hit all of my happy buttons. Makeup brushes work much of the same way, but holy crap are those expensive! Paintbrushes are fairly cheap, very portable, and a great sort of input that I haven’t found from anything else. Being able to “paint” myself before I paint makes the whole art experience ever more enjoyable.

3 Bad Textures

1. Sand- For someone that loves the beach, I sure hate sand. It’s gritty, it gets everywhere, and you keep finding in the most random places (in my socks? I didn’t even wear socks!). One of the worst feeling in the world for me is getting sand under my fingernails. *Shudder* I don’t like it. Dry sand is terrible, but wet sand it tolerable, mostly I think because it doesn’t cling.

2. Tags- My Autistic peeps, do I really have to say anything about tags? For something so small, it causes so much discomfort, and sometimes even pain. An accidentally missed tag can keep me from concentrating until it’s gone. And while I appreciate that more tags are easy to rip out, but still, why are they even necessary! If I ever run for office, it will be on a No More Itchy Tags platform!

3. Anything Sticky- My hands being sticky is basically an automatic meltdown. To the point where I carry wipes with me everywhere I go, on the off chance that I might get something on my hands. When I’m making dinner, I usually have to wash my hands a half dozen or so times, which certainly makes things take longer than they should. Like how running water up in the “good textures” section took me takes me outside myself, my hands being sticky sends my brain in to panic mode, and every section of my brain is just screaming “SOMETHING IS WRONG. WRONG WRONG WRONG”. And it is wrong. Sticky is wrong.

So those are the textures, good and bad. I bet you guys overlap with me on at least a few of them, but if you’ve got any sensory heaven or sensory hell textures, I’d love to hear about them!

All Hail the Mighty Toolbeast

Behold, the mighty Toolbeast, my faithful companion, my sensory savior, I would be lost without it. You may look at it and think to yourself “Self, that looks an awful lot like a monster shaped pencil case.” And you would be right. Its primary purpose may have been to hold school supplies, but it’s been elevated to so much more than that.

This is my AutistiKit, also known as a Toolbeast. It comes everywhere with me, because I never know when I’ll need one of its components. And need them I do. Over the past year or so I’ve done tons of field research, figuring out what I need to keep myself comfortable and meltdown free when I’m in unpredictable situations.

My collection at this point is almost entirely sensory based, because that’s usually what can tip me over the edge and into meltdown territory. And even if I don’t have a meltdown, sensory overload isn’t exactly comfortable, is it? I’m at a point in my life now where I can recognize pretty early on when things are starting to go bad, and by intervening early, I keep myself well balanced, which in turn, lets me do things I wouldn’t otherwise be able to do.

These are the essential contents of my Toolbeast, grouped by sense:

 Touch

*Wipes: I don’t tolerate my hands being sticky or messy, so unscented baby wipes are key if I’m going to outside, or eating.

*Thinking Putty: I keep a tiny tin of putty with me, because I can push it or rip it, which helps me not to unconsciously using Self Injurious Behaviors.

*Koosh Ball: The spiky hairs are satisfying to pull at, it’s my most active tool because it can be tossed around.

*Squishy Caterpillar: This was one of my first Stim Toys, and it’s still one of my favorites. I can’t describe why it’s so good, but I’m constantly reaching for it.

*Tangle: I can use this with one hand, and in my pocket, so it’s stealthy.

Smell

*Essential Oil Roller: I have had the awesome experience of blending my own scent, which is Sandalwood based. Smell keeps me grounds more than anything else, and I like that the roller means the oil won’t get on my hands.

Taste

*Pink Starbursts: Pink Starbursts are the only ones that I like, but the strong taste is grounding, and they also provide a little blood sugar bump, which I can always use.

Hearing

*Earplugs: Of all my senses, my hearing is the most sensitive, so something being too loud becomes a big problem really fast. Mine are rated up to 30 decibels, which even lets me go to concerts.

Sight

*Blue Light Glasses: These are generally made for people who spend a lot of time in front of a computer screen, but they’re perfect for toning down fluorescent lights, which many stores are so fond of.

Miscellaneous

*Instant Cold Pack: I discovered these when I was in Treatment, and they are amazing. They’re shelf stable until you stomp on them, and then they get cold. Putting one on my neck or chest is like magic; they’re incredibly soothing.

*Chewy Toy: I wear chewelry whenever I leave the house, but it’s pretty soft, so I keep a heavy duty one in the Toolbeast in case I need to do some hardcore chewing.

So that’s my Toolbeast. It’s been a lifesaver, and I highly suggest that everyone give them a try. Just think of the things that help you the most, in as many sensory categories as you need, and if they’re not quite portable, if they come in a mini version, or can be easily replaced with something smaller. Pencil cases make great AutistiKits, and they come in lots of fun varieties. They’re small enough to fit in a purse or a backpack, and so easy to personalize. Why not give it a shot?