Winnie the Service Dog

Sorry I haven’t been around too much, school has been getting busier and busier as the semester goes on, and wait, there’s more!

I’ve had some trouble getting the college to stand  behind my accommodations, aka, they saw my diagnoses, declared that there were lots of things they do to make my educational experience more fair, and then tried for months do avoid doing those things.

But sure that’s not all?

Stay tuned next week to see the post about the shocking end to my trip to the audiologist!

But seriously, you clicked on this because you saw the title, and I’m fine with the fact that you’re only here for one thing:

My girl, Winnie.

Jess and I have been talking for months now about the idea of a service dog. The discussion started back in August, in the first few weeks of classes, because she realized that she was getting worried about me being away from her all day, which is legitimate, because while I do really well in public, I depend on her a lot to be my backup.

She can tell when I’m about to faint, when my blood sugar is low, and that’s just the medical reasons. She can tell when I’m overstimulated many minutes before I can, and can spot a meltdown from 100 paces. This means that she can intervene before I accidentally get lost or hurt myself. I don’t like to admit it, but things eventually can and do go wrong if I’m on my own without any backup.

Hence the dog. We combed through lists of tasks services that trained dogs can provide, to Autistic people, people with physical health, and people with mental health issues, and we quickly realized that I’d be safer and that she’d worry less if I had a service dog.

There was only one problem.

Going through a company that trains service dogs is hella expensive. And charities that provide dogs to autistic people? Really only cater to kids. So we made a really huge and life changing decision- to train one ourselves. And don’t look at me like that guys, there’s a lot of resources out there, and we live in a big city with lots of resources! And if she doesn’t have what it takes to be a service dog, we’ll certainly love her anyway!

So, please forgive me if there’s a bit of extra puppy talk in the near future, but I also hope that as I learn about training Winnie to be a service dog, so will you! And if you think that Winnie is just too cute not to see all the time, we’ve made her a Instagram account. You can find her by searching for winnieintraining, or by clicking here @winnieintraining.

(and what the hell, here’s one for the road)

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?

5 Reasons I Love Musical Theatre

It’s summer in St. Louis, or at least the 95 degree temperatures make it feel that way, and summer here means lots of cool outdoor events. One of my favorites is seeing shows at The St. Louis Municipal Opera Theatre, otherwise known as The MUNY. They put on shows all summer, a new show every week, and if you’re willing to sit in the nosebleed seats, it’s even free!

This year the lineup is Jerome Robbinns’ Broadway, The Wiz, Singin’ in the Rain, Jersey Boys, Annie, Gypsy, and Meet Me in St. Louis- not a bad lineup!

We saw our first show of the season yesterday, and it reminded me how much I love live shows. So here are all the things that my autistic heart loves about musical theatre

  1. It’s Sensory Friendly: At least when it comes to performances. I don’t know about you, but I need earplugs to make it through movie theatre previews most days. (in fact, the movie Dunkirk was so painfully loud, I swore off movies until it was out of theatres). Concerts are also loud, although they can be loud in a good way, and often have lighting effects that make me kind of nauseous. Live theatre is great because it’s not prohibitively loud, unnecessarily bright, and more and more often sensory friendly shows are being offered! The only negative sensory thing I experience is having to sit still for a couple of hours- and I can’t really complain about that.
  2. Orchestral Music Gives Me Goosebumps: For most of my life, I was unaware that not everyone gets intense goosebumps and tingles when they listen to classical music. And I was astounded. I couldn’t imagine an existence where Vivaldi didn’t send chills up and down my spine, or where the score from Jurassic Park didn’t give me full body tingles. I always thought when people said that a piece “moved them to tears”, they were describing how. damn. good. music makes their body feel. For me, this sensation is the best type of body stim, and musicals are basically just 2 hours of stimmy bliss.
  3. The Themes are Universal: Relating to people can be tough. Sometimes when I’m in social situations, I find myself just smiling and nodding along- mostly because I’m either confused about other people’s experiences, or I just can’t relate. Real life is hard, but musicals are easy. They are about human things that everyone has felt before. Feeling oppressed? Les Mis. Feeling Misunderstood? Wicked. Family Troubles? Lion King. Mental Health Issues? Dear Evan Hanson. Cats? Cats! Sometimes it’s really just to just sit back and relax- without having to interpret the world.
  4. The Characters Literally Sing Their Feelings at You: That’s right, I said it. No figuring out facial expression or body language, no sorting out metaphors, and absolutely no dealing with the consequences of guessing wrong. I love knowing exactly what the characters are thinking and feeling because it lets me immerse myself into the story- something that doesn’t happen too often in real life. Can you imagine: you’re in a complicated situation, and you’re trying to figure out if you’ve said or done something wrong, and all of a sudden, the other person breaks into song? YOU DIDN’T VALIDATE MY FEELINGS EARLIER AND I FEEL LIKE YOU DON’T CAAAAAAAARE! It would certain make life more interesting!
  5. All the Feels: Sometimes I have trouble identifying my emotions. Am I upset? Am I overwhelmed? Am I sad? And I know for me, not knowing how I’m feeling can lead to a build up of emotions, and I will eventually explain. Figuratively, of course. So, at regular intervals, I find that I just need a good cry. I don’t even have to by crying about my life and my problems- musicals let me cry about other people’s problems. Key examples include: Do You Hear the People Sing (Les Mis), Wait for It (Hamilton), For Good (Wicked), and Goodbye Love (Rent). There are many more. Seussical, which is a funny show based on the works of Dr. Seuss has a song that makes me cry. Maybe I’m too emotional, but at least I’ve got an outlet, right?

So there you go! Now that you know how I’ll be spending my summer nights, I think it’s only fair that I know about your plans. Tell me what you’re looking forward to doing this summer, even if it’s just saying at home and enjoying your air conditioner!

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

8 Favorite Quotes About Autism

If you interact at all with social media, you’ll know that quotes are everywhere. They’re usually posted on top of images on mountains or sunsets, and are more often than not credited to ‘anonymous’. Not to say there aren’t some good quotes out there, especially ones that describe experiences, instead of forcing vague positivity on the reader. It can be hard to sort through Autism quotes, because a large percentage of them are made about Autistic children by Neurotypical adults. These often border on inspiration porn- and they infuriate me.

So, in order to combat these, I’d like to share some quotes about Autism that I enjoy.

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So here they are! If I had to pick one, I think that the square peg one is my favorite, but there’s so many quotes out there, that I’ve probably missed some great ones! So, dear readers, if you’ve got a quote you love, let me know (especially if they’re funny, what can I say, I’ve got a weakness)!

7 Essential Stim Toys

I’ve been stimming for 29 years, and for the first 28 of them, all my stim toys were improvised. I bit my nails, I chewed on paperclips, I’d dismantle anything that came apart, I made every sheet of paper I encountered into Origami; I even learned how to solve a Rubik’s cube, just so I could fiddle with it. These days I have toys that are actually made to fiddle with. I think I drained my entire bank account when I discovered Stimtastic! I have a large collection, mostly because I use different toys for different situations. So I present to you, my Essential Stim Toys!

1. Trivet Keychain: This was a DIY project, and one of the first things that I ever posted on Tumblr. It’s just a silicone trivet that I cut into strips and put on a keychain. The texture is satisfying to rub and squish, plus, you can suction your fingers into the hexagons. It’s a really cool feeling!

2. Tangle– I keep Tangles in all of my pockets, mostly because they’re quiet, and I can use them with one hand. They’re not something I use every day, but they serve a very specific purpose.

3. Rubik’s Cube: Don’t let anyone tell you that you need to be able to solve a Cube to be able to play with them. With their bright colors and moving parts, they’re very satisfying to fiddle with. Also, don’t let anyone tell you that solving a Rubik’s Cube is impossible- it’s a very linear process that’s easy to memorize, until muscle memory kicks in. YouTube is a great resource!

4. Squishies: These also come everywhere with me, but unlike the Tangles, I’m constantly using them. I have them in a variety of sizes and textures, and I love them all. There’s just something about them that are very soothing, and goodness knows I need that.

5. Howie: The one on the left is Howie. I got him from Target’s discount bin, mostly because he was soft. I didn’t think he could get much better than that, but I decided to do an experiment and de-stuff him, and then fill him with flax seed. Now he’s weighted, and he can be heated up in the microwave. He’s my couch buddy and I love him. Unfortunately so do my cats, so sometimes I have to share.

6. Spinner: I will fight anyone who says Fidget Spinners are just toys, just for kids, or just a fad. Fidget spinners, especially metal ones, have a weight unlike anything else. And shifting that weight from hand to hand really helps me focus.

7. Marble Maze: My marble maze is always in my pocket. The one I have is made of flannel, and the more I use it, the softer it gets! It also has foxes on it, which is always a plus. The combination between the softness of the fabric, and the kinetic motion of the marble makes it that much more satisfying, and even better, it covers more stim needs.

There we are, all of my essential Stim Toys! These, plus other sensory tool are what make up my Toolbeast, so I can function at my best when I’m out of the house.

Do you have any favorite Stim Toys? Have you found an awesome improvised Stim Toy? Favorite Store? Cool new DIY? I’m always looking for new sources of stim, so let me know!