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)

6 Ways I’m Getting Through The Semester

I have been in college for 4 weeks now, and has it been a serious adjustment. Last time I was on a campus, I was a tiny baby autistic me, only 18 years old! At the time I knew nothing about autism, and I especially didn’t know that I was, in fact, autistic, so I moved through the college world overwhelmed and confused.

I failed a class, not because I lazy, but because I couldn’t find it. No matter how hard I tried, I got lost, and eventually I just stopped trying. Little me also didn’t know that you could drop a class, which could have been really useful.

I was also so sensory overwhelmed that I spent most of my time hiding under my bed. Some days I wish I could still do that now, but my bed isn’t tall enough. #adultproblems

Because I knew how hard college was last time, I made sure to have a plan going in, and that really helped. Did all of it work? No, of course not, but it gave me a great foundation for tweaking it, so it can be better for the coming semesters.

So, without further adieu, here’s what’s worked for me so far.

  1. Visual Directions: My wife is a genius on multiple levels, but the skill she has that I admire most (besides her ability to estimate, I mean how am I supposed to know how big an inch is?) is her internal sense of direction. She’s one of those people who can just point to north, just like that. A few hundred years ago she probably would have been burned as a witch. Anyway, the week before classes started we walked around campus, following my schedule, and she took a ton of pictures, and they turned into this! I have one for every class, and thank goodness, because 4 weeks in I still get totally lost without them.

 

2. Hybrid Classes: When I met with my advisor, I signed up for 4 classes equaling 12 credits, as a way of easing my way back into the wonderful world of college. At the time I wasn’t thrilled, because most people take 5 classes/15 credits, and I wanted to prove that I could too. Thank goodness I didn’t. I ended up dropping and replacing 2 of my courses, partially because they weren’t doable sensory wise (30 college kids in a tiny classroom all talking at one is my sensory hell), and also because I just couldn’t handle wearing my neurotypical mask all the time. I knew I didn’t want to go the all online option. It was fine for my associates, but I knew I needed to learn some of the social skills necessary for employment in my field, so I compromised. I now have 2 in person classes, 1 hybrid (half in person/half online) class, and one totally online class. I think if I had tried to tough the original plan out, I would have burned out by midterms.

3. Color Coding: No one who knows me would say that I’m an organized sort of person. Executive Dysfunction rules my brain, and I struggle with notes and studying, and with keeping myself on track. Color coding has been a life saver. Each of my classes has a color (red, green, blue, purple) and everything pertained in each class is done in its color. So my green class has notes in green pen, is highlighted in green, uses green post its, has its due dates written in green, and every mention of it in my planner is green. It’s a great way for me to visually track what’s going on, and to keep all the details from running together.

4. A Really Good Schedule: I struggle with making good use of my time. It’s hard for me to know what I need to be doing and when. In the wild, I naturally fall into a routine, and am drawn to activities that happen at the same time, every time. But when my day is totally packed with stuff has to get done right now, I need more than my natural routine, hence, a Really Good Schedule™. Folks, I am schedule down to the 15 minutes. I know exactly what time I need to leave, what time I do Physical Therapy , even what time I need to what time I need to shower. Having a Really Good Schedule™ makes the world of difference, mostly because I’m not constantly stressing out that I’m going to miss a class, or not leave at the right time. 

5. Built in Self Care: I’ve been in mental health treatment and therapy long enough to know how important self care is. But I am only human, and when my life starts getting busy, all of a sudden I forget everything that I know about self care. With hyperfocus especially, I’ll work for hours, only to realize that my eyes are dry, and my back is aching. So, I make sure set a timer so I take a break, stretch, maybe read a bit. Self care for me also looks like making sure to spend time with Jess. We try to do little thing like bake and play board games every day, and we try to go to the park or the movies or a museum once a week. But for those random “I need self care right now” moment, I have a list. It has everything from taking a walk, to playing brainless games on my phone. The most important part is that I don’t have to make a decision. If I’m stressed enough to need self care, I can guarantee I won’t be in a headspace for picking something and making a plan.

6. Quizlet: I am a largely visual learning, to the point where just making flashcards helps me study more than actually using them. Please excuse my age for a moment while I say that it is So! Cool! That there are flashcard apps, because when I was in school the first time, it was pen and paper all the way. Enter Quizlet. It’s an app that also has browser access, and it is so much more than flashcards. Not only can you make the cards as you might traditionally, but it will help you learn by increasingly spacing out the amount of time it quizzes you on things, plus, if you have the date of your exam, it will make sure you learn in time. Add in multiple types of games and the fact that you can use other peoples cards and share yours, it’s a win for me.

There we go, all of the things that have kept me sane for the past  month. I know that I usually open up the comments for your input, but this time I’m very very very curious. If you have any tips that got you through school, please let me know! I know I’m going to be tweaking my system for the next few years, and I could really use ideas!

 

Adventures in Snacking

Two years ago, at age 28, I was diagnosed with Autism Spectrum Disorder, and one thing they do as part of testing is that they interview you, and they your family. It was after they interviewed Jess that I heard a term that had never been applied to me before.

Picky Eater.

I was offended. I was more than offended. I was an adventurous eater for goodness sakes! I ate soft shelled crab! Garlic ice cream! Peppers so hot they’d melt your face off!

I was offended. Until certain truths were brought up to me. I had a long list of food that I wouldn’t eat because of texture issues (ricotta cheese, bananas, anything with a grainy texture). I would eat the same foods over and over for months or even years at a time (Honey Nut Cheerios for as many meals as I could get away with being a good example.) And most significantly, I had an aversion all things new.

Shortly after this, I learned two new words: ARFID and Samefood. ARFID is an eating disorder- one where the disordered behaviors having nothing to do with weight or shape, and more to do with food phobias or sensory issues. I have ARFID, and it’s something that takes a lot of management. I heard of samefoods from the Autism Community, and they perfectly described my experience with Honey Nut Cheerios, of having specific foods that were some sensory friends and comforting, you wanted to eat them all the time!

All of this brings me to today, and my Adventures in Snacking. With classes starting and my mealtimes being more irregular, I needed to find some new more portable snacks. And that was a big problem.

We learned when I was in treatment that it takes about a week to acclimate to a new food, and to be entirely honest, I don’t have time for that.

Clearly, drastic measured needed to be taken. So we designed a challenge. A game even.

We took a long walk through the grocery store, and picked out some things I was willing to try. Mostly things with a lot of protein, because my blood sugar appreciates it. Normally trying all the options would take forever, but not today my friends!

We portioned them out so that Jess and I each had one bites worth, that’s it, only one bite, and after the bite was consumed, it got rated, then sorted, into three categories: ‘I’ll never eat this’, ‘I’ll eat this if I’m in the moods’ and ‘I want to eat this all the time’.

And I found a few new snacks, including a yogurt that has a tolerable texture, and chicken chips with 7 grams of protein!

This was definitely better for me than taking weeks being miserable because I’m constantly trying new stuff

Sometimes with Autism, you have to get creative, and it doesn’t always work. That’s why I’m so relieved that this one did, especially because I’ve got so many other changes on.

I’d love to hear any creative solutions you guys have come up with!

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 hope 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 more 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 enjoyed participating so much in the first place)

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

 

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!

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