An Educational Miracle

Jess and I have always joked that me getting through high school was a God damn miracle. Mostly because I don’t talk to people and I have trouble following directions and I don’t tend to participate.

When we began to prep for me being back on a college campus for first time in 12 years, it started to become less of a joke, as we struggled with accommodations and my inability to follow written directions (aka, I get lost a lot), and yet again, the fact that I don’t talk to people. Even important people, like the ones at Disability Services, or my professors.

Now that school has started, there are no jokes to be made- the fact that I even made it out of middle school was the miracle, and there are no words to describe how unlikely it was that I graduated high school, much less that I graduated in 3 years.

Smart, but lazy, my teachers said. And those were the ones that like me.

I am started my third week of school, and some things have become very clear. 1: I can’t understand professors when they talk. I can hear them, but it’s all garbled. 2: I can’t read most of my textbooks. The words are too closed together and I can’t make my eyes move between lines. The words just won’t cooperate. 3: I was not built for group work. I struggle to communicate, and to figure out what people want from me. And worst of all, there is constant talking and texting and emails- way more than I can handle.

I have some accommodations through the University, thank goodness, but only ones that apply to Autism. To get help hearing my professors, I’d need an Auditory Processing Disorder diagnosis (I have a appointment with an Audiologist in October). In order to get software that would help my read my textbooks, I’d need a Dyslexia diagnosis (which I’m not certain I even have). And no amount of diagnosis’s could get me out of group work.

So I’m not here to complain, I’m just really frustrated. On one hand, it’s nice to know why I had so much trouble the first time I tried college. On the other hand, I did everything right this time (registered with the Disability Office, took classes I had a good chance at succeeding in, etc), but things are Still. So. Hard.

Going back to school was a big decision for me. It would be so easy to stay home all day and only talk to Jess and my therapist and my OT. But I think I want more.

I’m just so afraid that I won’t be one of those Inspirational Autistic Success Stories (IASS’s for short). Instead of pushing through adversity and finding my special wings to fly off into the sunset with, I might *gasp* fail.

Sometimes no amount of trying can make you succeed. Sometimes instead of rising up, you burn out. Sometimes thing don’t get better, they only get worse.

So, either I will find help and get my shit together, or in a few months, you might be reading a post here about what to do when your plans fail, and how to set realistic expectations.

I hope it’s the first one, don’t you?

6 Ways I Survive Haircuts

So here I am, waiting for a haircut. And you may not know this, but letting someone cut my hair is a god damn miracle, because for many years (read decades), I wouldn’t let anyone except Jess cut my hair.

But a few years ago, I started investigating if I could make a real haircut work, and it took some time and some tweaking, but I can proudly say that I get my hair cut regularly, and, AND I survive it.

So here’s a few quick things I do to keep myself sane, and then I’m off to get trimmed.

Wish me luck!

1. Plan the day: So I think the number one most important thing for me is to keep my haircut day clear. No other appointments, no other stress, basically keeping myself as un-stimulated as possible, to make up for the inevitable overload. So I keep my day low-key. Watch a favorite show, eat my safe foods, cuddle with the cats. I want to keep myself as fresh as possible for my appointment.

2. Schedule Smart: My stylist knows me really well now, and when I make appointments, she schedules me when her schedule is mostly free. So I’m not in a room with 6 others people and clippers and blow dryers blaring. It’s just her, me, and maybe a couple other people. Going to smaller salon also helps with this, because they’re not trying to get people in and out as quick as possible, like a chain does.

3. Get to know a stylist: I am so lucky. I found my stylist because my wife went to her, and they got talking and Jess learned that my stylist (L) had an autistic sister in law, and she offered to see if we could make it work. Now I realize that not all stylist can know someone with autism, but finding someone who can listen and work with you makes a whole lot of different. L knows that I don’t like small talk, so we only talk about the cut. She turns the chair away from the mirror for me. She asks good questions about what I want. I know I lucked out, and it usually takes some stylist shopping, but it makes a huge difference.

4. Sensory sensory sensory: The absolute worst part of the haircut process for me is the many ways that I can get sensory overload. There are things that I do now to keep things as doing as possible. Here is a short but hopefully complete list. Washing my hair in room temperature water, and having strategic towels to keep water out of my eyes and ears. When touching is necessary, firm pressure at all times. No snip snip of shears, long deliberate cuts that don’t sound hellish. No blow dryers ever. Extra thorough efforts to get hair off my neck, so I can make it home to shower. I’m sure there are more, but these are my important ones

5. Be prepared: I still make sure that I’m prepared for a haircut appointment like I am for anything else. So for me, that means stim toys, ear plugs, and miscellaneous things like wipes, snacks, and something to read. You never know when someone will be running late and you’ll have to wait, or when you’ll be more overwhelmed than you predicted. Lastly, if you can go with a buddy, absolutely do. Having someone safe and familiar around is calming, and if necessary they can help you communicate and advocate for you if necessary.

6. The Cheat: This is cheating slightly I think, because most salons don’t have a shop dog, but I am greatly helped by this tiny bundle of love!

So it’s haircut time, with any luck I’ll make it through, and my hair will finally be out of my face. Wish me luck!

Great Expectations?

 

 

I feel like I’ve hit a bit of a wall lately when it comes to contributing to my community. It’s not that I don’t want to participate. It’s more like every time I try to, I freeze. This isn’t exactly surprising for me, and I’ll tell you why. We all know about the Fight of Flight response. What they don’t tell you until you hit Advanced Mental Health Status is that there’s a third ‘F’, and that ‘F’ is Freeze. I am a freezer. Not the kind that keeps your popsicles solid, no, I am that gazelle in the African Savannah who hears the lion coming and decides that the best course of action is to stand perfectly still and that that the lion think’s they’re dead. Let me tell you right now, as a gazelle, it doesn’t usually work.

I love being an active part of my communities- and there are a lot. My friends used to refer to me as the Uber Minority, which makes me sound like some sort of awesome Transformer type robot. Unfortunately, that is not the case, and it more means that people kind of tilt their heads when they first meet me. They know that there’s something different about me, but they can’t tell what it is. Sometimes they try and guess, which depending on my mood, can be a lot of fun. Given my combination of identities, no one ever guesses perfectly right, and honestly, if they did, I wouldn’t know what to do with myself. I’d probably off up some sort of prize. Probably a Tangle, as I have a bunch, and always have one on my person. Not my fuzzy Tangle though. Hopefully they’d appreciate their prize.

A lot of communities mean a lot of opportunities to interact. There’s National Eating Disorders Month, Autism Acceptance Month, and Pride Month, just to name a few. All of these usually make me really enthusiastic about being active on Tumblr and Instagram, and even here on this blog. But it doesn’t be a surprise to you that every opportunity that’s come up this year has made me freeze. Activity on all of my accounts dropped off suddenly, and I hate it so much.

I’ve been trying to work my way back up. Luckily, I had submissions I could use on my Tumblr blog (check it out!), and was at least still comfortable liking things on Instagram- things with minimal interaction, and that didn’t require me to put myself out there. Because let’s face it, I’m a bit of a coward.

At least that’s what it feels like. If I think about it without beating myself up, it’s more like I’m a perfectionist- a perfection that when combined with my intense need to be a good advocate and a good disabled person, freezes me in my tracks.

But that’s an awful lot of pressure to put on myself, isn’t it? I can say it, I’m not sure that I really mean it. So let my put it all out there. It is not my job to represent every person in my community. It is not my responsibility be witty and eloquent so strangers will pay attention to what I have to say. I IT IS OK for me to explore my identities publicly, IT IS OK to share my opinions, and IT IS OK to say things that others in my community disagree with (as long as I am respectful).

I can take chances, make mistakes, and get messy and the world will not end!

Doesn’t all that sound great? How awesome the world would be if we were all able to go through life unafraid of trying, even if there was a chance of failing. Clearly easily said than done. But if therapy had taught me nothing, it’s that baby steps are always the way to go. So:

I will keep to my Tumblr post schedule (but not kick myself if I miss a day)

I will keep writing (even if the end product doesn’t get posted here)

I will have fun posting things to Instagram (and stick around to see what my friends are posting too)

I will participate (and I’ll try to remember why I enjoy participating so much)

And lastly I won’t get down on myself when things aren’t perfect.

 

I’m a Quitter

It’s official. As of Saturday, I will officially be a non-smoker.

I’ve been smoking on and off since I was 16, and while I’ve quit before, it’s never lasted more than few years. I think a big reason for that is because smoking becomes such a satisfying routine.

A goodness knows that I thrive on routines.

So I’ve been thinking about quitting for a while now, but I’ve been having trouble doing the actual, you know, quitting part. I’ve been slowly decreasing the number of cigarettes that I smoke a day, but I’ve hit a bit of a wall. It wasn’t that I didn’t want to quit, but I was having what I think of as motivation issues.

Until last Saturday, that is. Since then, I’ve had tons of motivation.

I’m having surgery in July, and since it involves grafts, the surgeon requires me to not smoke. Fun fact: smokers have a 20% more chance of graft rejection than nonsmokers, which is good enough motivation for me to push through the discomfort and just quit.

Back to the routines. I smoke at specific times of day, every day. The act of smoking is so closely tied with things like eating meals and leaving the house that I have trouble separating the two. These sorts of activities are transitional, and that’s an Executive Dysfunction thing that I really struggle with.

So, the struggle begins to find replacement activities! After much consulting and debating, I’ve got a plan that I think will work. I’m going to use both distraction and sensory replacement to keep myself honest. Enter my Gameboy and coffee flavored hard candy. Instead of smoking before meals, I’ll take 5-10 minutes and play a game (Mario-kart and Mario party, mostly) and suck on hard candies to fulfill the oral fixation.

I’m not sure how this is all going to go. It looks good on paper, but goodness knows that changing routines is far more difficult than it should be, at least for me.

Wish me luck, and please excuse any rant-y posts while I adjust to all the changes!

P.S. If you’ve ever quit smoking and you have any tips, please let me know!

4 Reasons Staycations Are Great for Autistics

The word “stay-cation” gives me a bit of a visceral reaction. Which is weird, because I usually like wordplay, especially of the rhyming variety. But for whatever reason, ‘stay-cation’ makes me cringe and promise myself that I’ll never take one.

Except that my in-laws came to visit this week, and they wanted to do all the cool but totally touristy stuff that St. Louis has to offer.

It was exhausting. I don’t understand how people can go from doing minimal movement in their day to day lives, to being able to walk miles upon miles and climb an infinite number of stairs.

Now granted, I would have been mentally and physically exhausted whether we were in St. Louis or Paris, and as the week went on, I came to realize that once I got past the name, stay-cations were made for me!

So here are a few reasons why taking your vacations at home are awesome:

  1. Minimal Travel: I don’t know about you, but while I love going places, I hate getting there. Travel gets difficult because it’s hard to predict. There could be an accident on the highway, your plane could be delayed. No matter how hard you try to plan out your stops, the rest area you were counting on could be closed. And here’s a slight bit of TMI for you- I’m not great at telling when I have to go to the bathroom, so when I have to go, I have to go NOW. So to sum it up, cars are uncomfortable, airports are loud, trains are crowded, and buses smell funny. Staying in your own city minimizes all of these issues, and frees up tons of energy for stuff that’s more fun!
  2. Familiar Food: Eating out once and a while is a lot of fun. I like getting to eat foods that I can’t easily make at home (like sushi and curly fries), but holy crap does eating out have diminishing returns. It goes from fun to tedious in the blink of an eye! This week was no exception. But something that I noticed was that familiar foods made eating out a bit less stressful. I could mostly stick to restaurants that I’d been to before, which added in familiarity. And be not being somewhere new, I could be sure that the dish I was ordering wouldn’t have any weird regional variations (who puts beets on burgers? I’m looking at you, Australia).
  3. Your Schedule isn’t Completely Messed Up: I thrive on my routine, and even if I’m having the time of my life on a vacation, not being able to do things at their scheduled times really takes a toll. You can do as much planning as you want, but it still won’t be quite the same. My cartoons before bed routine just isn’t as effective if it isn’t my bed. Enter the stay-cation. Being at home means that even if your days are all messed up, you can keep your mornings and nights pretty much the same! I’ve found that I’m in a lot better of a place if I can start with my morning routine and end with my bedtime one. It makes the chaotic middle part more tolerable. And as a bonus- you get to sleep in your own bed! (Also, you don’t have to fit 5 stuffed animals into your carryon)
  4. You Can Always Just Go Home: None of us wants to feel like we’re failing at things. It’s a crappy feeling, and for me it generally leads to me mentally kicking myself for no being able to do what “normal people” can do. But failure happens. To everyone. And no matter who you are, it sucks even worst on vacation, because you spent time and money traveling, just to not be able to enjoy yourself. That’s what’s so great about stay-cations: you’re close to home. So it’s not like you wasted a day of travel. Sometimes you just need to go home, take a break, and try again later. And there’s no shame in that.

Have you ever taken a stay-cation? What was the best part? If you haven’t, tell me one thing about where you live that’s worth seeing!

Bonus Stay-Cation Pictures

The Gateway Arch

Penguins at the St. Louis Zoo

Meramac Caverns

Hearing and Saying

I don’t know where this month has gone. My life right now feels like a whirlwind.

Between spending 6 hours a week at a hospital getting saline infusions, making trips out to campus to finalize my fall semester, planning our trip to Kansas City for the Unitarian Universalist General Assembly, preparing for my in-laws’ visit in May, and starting an intense physical therapy protocol, I haven’t had time to breathe.

And breathing is important, or so I’m told.

Writing, too, has taken a set on the back burner. And it’s not like I don’t have ideas, I just can’t get them down before they fly out of my head.

So this isn’t a carefully planned and researched post about a facet of Autism. It’s not even one of my typical lists, with discussions and comparisons. No, this is a collection of the one thing that’s been sticking in my head these days: funny and/or ridiculous things I’ve said or heard recently.

“He sounded disappointed that the cat didn’t fit down the toilet?”

“Are you prepared to make your evil laugh?”

“Just because she didn’t pet you doesn’t mean you can hiss at her.”

“The bush is buzzing again. Must be April.”

“This sign is old. Irish people people objected to being compared to potatoes.”

“I can’t tolerate it orally”

“Buttons makes everything a bit more formal.”

“I need you to come touch Einstein’s face. NOW.”

“What, have the hipsters ruined hats for everyone now?”

“But if we end up there, can I ride a camel?”

So here we are. It’s funny the things that come out of our mouths somethings. I’m not an eavesdropper, but I definitely feel like I hear more of other peoples’ conversations than your average neurotypical. I like to chalk that up to hyper-hearing and a natural curiosity.

I hope that your week is filled with amusing conversations!

90% Shameless Self Promotion

I absolutely understand if you don’t click on this. Who wants to hear someone talk about themselves day in and day out? Except maybe bloggers…

Anyway, it’s April, which is Autism Acceptance Month, and I’ve been having some fun. My Etsy store is empty 90% of the time, but as April draws closer, I start feeling the pull to get creative. And I figure, I’ve got all this stuff that I think people might enjoy, so why not?

I’ll keeping the pitch simple here. My shop is open. Everything is under $5. 10% of anything I make goes to the Autistic Self Advocacy Network. Free shipping to the continental US, and 15% off if you spend more than $5.

So. If you have any need for cute stickers, pins, or worry stones, I’m your person.

Thank you for reading this far- I’m just going to leave you with a few pictures…

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Autism is not a tragedy

special interest

autisticat body