Why Am I Here?

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No seriously, do you know why I’m in the kitchen? Because I don’t.

I may joke about a lot about being old, it’s mostly a product of having spent the past few years mostly surrounded by people who are 5+ years younger than me. On one hand, this is great, I get to keep up with what’s new and popular, but on the other hand, people tend to assume that I’m about 22. It’s flattering (I think).

I know that I’ve said before that nothing makes you feel older than foot pain, and I stand behind that, but I’d like to add an addendum that says that memory loss also makes you feel infuriatingly old. No matter what my intrusive thoughts say I know that I don’t have any super weird and rare medical thing going on. My trouble remembering stuff is a combination of mental health issues and totally normal aging.

Still, I say “I don’t remember that” an awful lot these days.

I don’t remember a lot of things these days. I can’t remember if I fed the dog or not, I can’t remember what I had for lunch. I certainly can’t remember why on earth I’m in the bedroom and I can’t remember where I left my book. Actually, those last two could be related. If challenged, I can only remember what I just said about fifty percent of the time and can remember what you said even less of the time.

I had troubles galore during the FIFA Women’s World Cup remembering which countries were in which group. This would normally be something that I’d take great joy in memorizing but while was I sure that Norway had just played Nigeria, I couldn’t for the life of me remember what the other two teams were in Group A. I’m sure you’re hanging on the edges of your seats with me so I’m happy to inform you that the other two Group A teams were France and South Korea.

For me, this whole thing is more of an annoyance than anything else, but like everything else about being in a marriage, Jess is affected too, and I feel bad about that. We’re not the sort to bicker about everything but there was some general crankiness on both sides before we realized that I was missing some key memories.

So, theory time. We all know that my hearing is not great thanks to super calcified eardrums, could it be that I’m simply not hearing things? That covers some stuff, but it doesn’t explain why I forget where I’m going or what I was doing. My quality of sleep has suffered greatly with the breathing troubles, but I have doubts that sleeplessness could be that big of a factor.

I could be losing my mind. It could be alien abductions. Hypnotism is always a possibility.

No matter what, I feel like I’m going crazy, which is so frustrating because up until recently I’ve been feeling decidedly less crazy than usual. And honestly, if I was going to pick a crazy, I’d do something cool like Synesthesia, not Forgets Just Enough to Be Annoying Disorder (not a real disorder).

I suppose that until this thing sorts itself out, I can just remind myself that Neville Longbottom had a terrible memory too and he turned out pretty awesome.

 

 

5 Summer Hacks For Autistic Folks

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Summer is here! The exclamation point is less about excitement and more about alarm. Don’t get me wrong, there are good things about summer, like smores and fresh berries and corn on the cob (how have I never noticed that my favorite parts of summer are food?) But at least to me, the downsides of summer outweigh the good stuff.

I’ve spent 30 summers on this earth so far, and I like to think that I’ve learned some things, especially when it comes to sensory stuff. So here it comes, the worst parts about summer and how to deal with it.

1. Sun Safety- There is a video of me dating back to about 1988 that I will never live down. I’m about 18 months old, I’m at the beach, and I’m refusing to let my mom put sunscreen on me. This is slightly funny at best until you picture a tiny Meesh rolling back and forth across the room attempting to escape the sunblock.  Luckily it is no longer 1988, and there are many more sun safety options.

As an adult, I still find sunblock on my skin to be sensory hell. I have found, however, that the spray on versions are way more tolerable. These work for me because I’m biracial and don’t burn, however, this may not be the best option for people with lighter skin. This year though I found Solar Buddies. You can fill it with your favorite sunblock, and it has a foam applicator and a roller ball for a thin but protective layer. And if sunblock is a total no-go, a good hat and a light coverup can do a lot.

2. Staying cool-  I live in Missouri, and that might not mean anything to you yet, but I have 2 words for you: 80% humidity. It is hard to keep cool for your average person, but autistic people like me need to work even harder at it. I can overheat in about 10 minutes, which is unacceptable to me when there’s so much cool stuff to do. I refuse to miss out on festivals and concerts and roller coasters just because I can’t figure out how to stay cool. My two staple things to beat the heat are fans with water misters and chill bandanas. They both involve small amounts of water, but it’s never been enough to bother me (and I’m the ruler of hates getting wet). Bringing a large umbrella for the worst of the sun work well too. Plus they come in cool prints!

3. The Pool- Ask any kid what the best part of summer is and they’ll tell you that it’s the pool! Even as a child I was confused by this. It’s not that I hated swimming, I was on the swim team for years, but what I did hate was chlorine stinging my eyes, water getting stuck in my ear, and the way the pool felt all rough on my feet. I still hate those things, but I feel like I’m better able to tolerate them now with the tools I have. Here they are- goggles (I think these seal the best), pool socks, and swimmer’s earplugs. If you really want minimal getting wet, more and more pools are putting in splash pads too. I still don’t like getting wet, but sometimes it’s necessary.

4. Clothing- I am bad at going from season to season when it comes to clothes. So bad in fact, that it was cited in the documents about my autism diagnosis. It’s just so stressful! It’s hard to tell when it’s time to switch from pants to shorts, or from tank tops to hoodies. It also doesn’t help that sometimes wearing a t-shirt is okay, except that it gets soaked at the first drop of sweat.

So here are my rules for dressing during the summer. Rule 1, try to stick to light colored clothes if you’re going to be outside a lot. It’s a little thing that really helps. I also have super lightweight vests if I need layers. Rule 2 is all about athletic wear. The moisture wicking is amazing, so it helps keep you cool, plus it keeps the gross sweatiness at bay. Lastly, rule 3 is natural fibers whenever possible. Polyester doesn’t breath the way that cotton, linen, or hemp does.

5. Hygiene- Do you know what comes along with the summer heat? Sweat. And sweat makes everything feel…honestly? gross is the best way I (a Writing Major) can describe it. The balance is so hard because there are two opposite forces pulling at you. One says that the sweat is making your skin prickle and you clothes clammy, and the other says that the last thing I want to do when I’m already hot and uncomfortable is to get in a hot shower and get my hair and my body wet, and risk getting water and soap in my eyes. Did I mention that I hate being wet? So here’s what I’ve got for you. Deodorant wipes are about the best thing ever. I like these Pacifica ones. But they make scentless ones and individual wrapped ones. Anything you could possibly want from a wipe. I also like Lush’s anti-chafing powder, mostly because you can put it anywhere you get sweaty and it will absorb the sweat and make things smooth.

So there are my summer tips in a nutshell. Summer officially starts after the 21st of June, so we’re just in time! If any of you have summer tips I will gladly take them! I’m already counting down until the coolness of Fall rolls in.

Bored Equals Crabby

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Jess visibly cringes every time I utter the words “I’m bored”. I’m not positive if it’s an autism thing or not, but being bored makes me downright crabby. And if I’m suffering, everyone ends up suffering (this makes me sound evil, I promise I’m not).

I’m out of school for the summer. I didn’t end up taking summer classes because a: there weren’t any that were super useful for my graduation plan, and b: My therapist, jess, and I all agreed that I needed a mental health break. I was all set for summer, I had a ton of things I wanted to do, like ramp up my physical therapy routine, do a lot of training with the puppy, and volunteer. None of this happened. I feel like at this point there’s no point in making plans because my body will always find a way to screw things up.

Firstly, I managed to injure my foot. I cannot explain how aching feet makes me feel so old, but they do. After seeing a podiatrist I spend several weeks in a walking boot, which was surprisingly ok sensory wise. I mean, yeah it smelled a little weird and the velcro made awful noises every time I walked, but the boot put nice, snug pressure on my foot and calf, it was like it had its own little weighted blanket. Now I’ve graduated to extra supportive shoes with extra extra supportive inserts, but I’m still not allowed to walk normally. This has thrown a medium size wrench into my plans.

There is, however, an massive size monkey wrench too, and it’s called Respiratory Muscle Weakness. I mentioned a few weeks ago that earlier this year, I started to have trouble breathing when I laid down. I am not going to go through the whole ordeal again, but needless to say, I’m up to 12 vials of blood, and 11 radiological tests, and I’m not feeling any better. Being able to exist in a horizontal position is really important for things like physical therapy, and being as to sit upright at length without getting short of breath is ideal for everything else.

So here we are. My plan to stay on a schedule over the summer has been totally wrecked. My entire team and I know that routines are important to my mental health, so being organized is seriously necessary, but there’s only so much I can do.

I am willing to admit fully that when it comes to things like this, routines and plans and knowing what’s going to happen and where or why or how I totally fit the autistic stereotype. All I want to do feel surrounded by carefully planned activities and stimuli that make me feel good.

I’m in a tough spot though. My old plan was based on leaving the house every day, but that’s not really happening right now. So I’m at home. I’m reading a lot of books and getting ahead on writing articles and essays and blog posts. I’m also turning all of the D&D characters that I’ve designed into concrete ideas and  making character sheets for them. How is this useful? I’m not sure but if my current charcters ever dies, I’ll have 2 dozen others to replace him.

A query- is it harder for you all to have to change something completely, or have to change it partways? Because I’ve gotta tell you, it’s illogical, but I almost always do better if I have to say “fuck it, I’m scrapping the whole thing and figuring out something new” then if I have to collect the pieces and try to reassemble.

A real-life example here is that I’m not going to get to lift weights for my physical therapy- it’s just not going to happen. Instead i now have a pull-up bar so I can be vertical and not put pressure on my foot. It took a while to come up with something new, but it wasn’t painful, you know? The dog training on the other hand, I just can’t wrap my head around. It’s still me, it’s still Winnie, we’re still training, but we can’t follow the old plan. Not going to lie, I’m still struggling with this one.

This is just not how I expected my summer to go, and I feel kind of silly being disappointed about the whole thing. I feel like as an adult I should be able to handle change and boredom without turning into a crustacean, but here we are. I think that one of the downsides about being diagnosed with autism later in life is that I was offically ann adult for almost a decade before I found out about the autism thing. This means that I’m still learning to it’s ok for me to struggle with things and that recognizing my weaknesses and being gentle with myself is part of the package.

I’m still crabby though.

 

7 Recent Pictures and 1 Video

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In the era of smartphones that have better lenses from my old Nikon, I, like many other millennials have a phone jam packed full of pictures. And for me at least, there are usually like 5 shots that are almost the same but not quite.

Since I have approximately 1200 pictures on my person at any given time, I made an effort to go in periodically and clean the copies out. In doing this I get to enjoy pictures that I’d loved but totally forgot I had.

I did this recently (and got rid of almost 300 pictures!) but I wanted to share some of my favorites, here they are, and I promise it’s not just 7 pictures of my face.

1. This was my first time wearing a suit, and I kept wavering between feeling confident and feeling like I was playing dress up. I thought this image was a great representation of how I was feeling.

2. Once a year, on the first Saturday in May, is Free Comic Book  Day. This year it coincided with Star wars Day too! It’s a tradition for Jess and I to research which comics we hope to fine, and then visit all the comic book stores near up to find them. It’s one of our favorite things to do together, and we brought home a good haul this year!

3. This is Winnie’s Puppy Kindergarten graduation picture, she almost looks proud of herself right? It’s hard to believe that she was this little, she’s 9 months old now and working toward her Canine Good Citizenship award, but she’s still got that dopey grin!

4. Can you see how soft and squish Hammy is from this picture? No matter how soft he looks, I promise he’s softer in real life. He may be the stimmiest thing I’ve ever owned, and I got him from Walgreens of all places. He’s a Squishmallow, which is a perfect name plus, look at his little face.

5. I’m the sort of person that needs to eat snacks, but I’m also the kind of person that hates snack food. Enter this blend of almonds, cashews, m&ms, and tiny pretzel balls. It’s my go-to snack for class, and also mighty photogenic if I do say so myself.

6. This probably the best Kickstarter game I ever backed, partially because it’s so pretty that they offered prints of the tiles, partially between it’s just challenging enough, partially the components are satisfying to hold, and because I can actually beat Jess sometimes (and that’s a rarity).

7. This is me and Jess, aren’t we cute? My sister-in-law got married this spring and we got to get our fancy on. This is actually the 2nd time I wore a suit, and I felt a lot more confident about it than the first time. I think it was probably the bow-tie.

8. I promised a video and here it is! It’s hard to resist a Winnie video, especially when she looks so darn happy about the whole thing. The toy is from Chuckit, she looks all of their ball toys, but this one especially! It’s getting too hot here for her to do a lot of running, so toys that keep her playing are worth their weight in gold!

T. T. Testosterone

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About a year ago (almost exactly), I made a big announcement here, do y’all remember?

If not, here’s a brief recap: I very excitedly revealed that because of the gender dysphoria that I had been experiencing, I was making the big decision to have Gender Affirming Surgery, aka Top Surgery. I think I said something like “holy shit, no more tits”. That sounds like something I would do, right?

Well, here I am again, in a similar situation, one that is yet again affected by gender dysphoria.

I was confident as hell going into Top Surgery. I’d known since puberty that I wasn’t meant to have breasts, and was ready to go as soon as the decision was made (from the first consult to the surgery day took about 3 months. This will be important later.)

I was also confident that once my chest was flat that my dysphoria would decrease to a livable level. Because when you fell outside of the gender binary, you have to be realistic about the fact that things won’t be perfect, but they will be good enough that it won’t affect your life too much.

It’s baffling how wrong I can be about myself. Don’t get me wrong, I love my new chest, it’s everything I ever hoped for. And to give myself some credit, my dysphoria about that part of my body is basically gone. Unfortunately, and unpredictably, even more dysphoria has rushed in and filled the void. I was in no way expecting this.

I considered myself lucky because my insurance company doesn’t require hormone therapy before top surgery like a lot of them do. I knew that hormones were an option and that lots of nonbinary folks do opt to use them, but back then there seemed like so many downsides, so many things that I didn’t want to happen to my body that it outweighed the results that I was interested in.

Testosterone things I want: fat redistribution, more muscle, facial shape changes. Testosterone things I don’t want: facial hair (other body hair is fine, I’m already super hairy), bottom growth. Testosterone things I’m neutral about: voice deepening.

Looking over the pros and cons on that list, to me, it drifts slightly towards hormones not being worth it. But when I started to think about it, I started to realize that these were not the only factors. A strange phenomenon started happening to me a few months after my surgery, and since then has been the driving factor when it comes to making T an option, and it’s not about how I see myself anymore, but about how other people see me.

I was so surprised at the rage that I felt the first time someone called me ‘ma’am’ after my surgery. My brain was screaming at the universe “I went through the pain of surgery and recovery and still people think I’m a girl?!!” It just didn’t seem fair. I’ve been using they/them pronouns for a while now, and I certainly don’t mind when people call me he or him or sir. But at this point in my life, she/her/ma’am makes my blood boil. I’m also at the point in my schooling where I’m thinking about internships and jobs, and how much more confidence I’ll have if I feel comfortable in my body.

I mentioned earlier how it took a while to go from consult to surgery last year. So when I finally made the decision to see an endocrinologist in a gender clinic, I assumed that it would be the same initial consult, secondary consult, required therapy, doctors notes, wait wait wait. Again, I was wrong. The doctor’s appointment was awesome. They asked about preferred names and pronouns (and used them!) The doctor and I talked for 20 minutes, and as it wound down, I expected him to tell me how many hoops I’d have to jump through next. As it turns out, the answer was zero hoops.

Right now. He said I could start right now.

Color me surprised. And that color would be the color of panic because I hadn’t expected that at all. Turns out there are doctors out there who respect the fact that you’re a well-informed adult who can make their own decision. The autistic part of my brain froze up, of course. There was a lot of sputtering and stammering. My wife had to remind me that we’d been talking about for almost a year, and then she humored me and we made a pro/con list.

I bet you all know what the end decision way. If you don’t, I’d like to direct you to the 3 dozen needles, box of alcohol wipes, and the viscous vial of pure dude juice in my bathroom.

It’s been two weeks, I’ve had 3 doses. I don’t feel anything yet, and I’m not expecting to yet. I’ll give you the same warning I’m going to all my friends- I will be going through puberty. Again. So if I’m irritable and smelly and hangry all the time and pimple faced and my voice cracks, 1: you have the right to poke fun at me, and 2: I’m still me, no matter what.

 

5 things I learned from ACT therapy

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Once upon a time, there was a human named Meesh, who didn’t know that ignoring their mental health could end in disaster. They hid their worsening issues from everyone, including themselves.

The details aren’t important, but needless to say, they ended up in a place that was so unstable, they couldn’t fix it themselves, and ended up in something called Higher Level Care, which involved spending 10 hours a day in therapy.

But the therapy wasn’t as effective as everyone hoped, and they were stumped. It was only after Meesh was diagnosed with autism that a different type of therapy was tried. That therapy was called Acceptance and Commitment Therapy (ACT), and it made a difference like no therapy before had.

I’m sure you figured out that that story was about me (given that I used my name and all). ACT was the only therapy I’ve ever really connected with, but because I’m me, I like a lot of it and hate a bit of it.

But I like enough about it to share some of what I know with you, so here we go!

1. That I have values- Acceptance and Commitment Therapy teaches that everyone has values. Whether it’s family or education, humor or empathy, we all have things that important enough to keep fighting for. This seems a little bit obvious at first. Of course, I care about things, I’m not a robot. But at least for me, learning to lean on my values when I was having a hard time with something became comforting. It gave me a clear, on paper reason to keep going. Here is an example of a values list

2. That sucky stuff is going to happen and that’s ok- Many ABC Therapies, especially Cognitive Behavioral Therapy (CBT) drive me nuts. They are all about changing the way your brain thinks. I don’t know about you, but I’ve spent my whole life trying to do that, and it’s never worked. ACT teaches the opposite, in that you can’t always control what your brain does, but you can be prepared for it, so it’s less scary and overwhelming. I’ve always felt like this is a more realistic point of view.

3. How to make a good plan- Another tool that ACT gives you is the ability to make a plan for when things go bad. It figures, if you have a plan full of positive coping skills sitting in front of you, you’ll be less likely to use the negative coping skills. This had a surprising effect on the rest of my life as well. Executive Dysfunction shows its head for me in the inability to plan efficiently or make lists. Having someone who was trained to teach these things and go over it step by step with me (multiple times) made me significantly better at it.

4. That I hate visualization– “Imagine you are on a beach”, “Picture your thoughts floating down a river”, “Visualize your life in 5 years”. Instructions like this are my nemesis because I can’t actually make pictures in my brain. If I close my eyes and tell myself that I’m on a beach, I can imagine the smell of salt, I can imagine the sounds of the waves, but I can’t picture anything but a blank wall. It’s frustrating, especially when you’re being asked to do it multiple times a day. I’m telling you this because in any therapy there will be stuff that doesn’t work for you, and this doesn’t mean that the therapy isn’t a good fit. It’s perfectly valid to use the parts that work, and leave the ones that don’t work behind.

5. Grounding is stim-friendly- Grounding is awesome. It is using your senses to help keep you in the present, and to help you calm yourself. It is made for us autistic folks. To ground, I use weighted blankets, essential oil rollers, sour candies, sensory toys like putty and beads, and I play counting games with myself. Grounding works differently for everyone. I’ve met people who like to color, people who like to talk to friends, people who like to put smelly lotion on their hands. It doesn’t really matter what you do, as long as keeps anxiety or meltdowns or dissociative episodes from escalating. Grounding isn’t necessarily unique to ACT. CBT and especially DBT use it too. Here’s a list of grounding suggestions 

When I talk about stuff like this, I’m never trying to sell you on anything, I just figure if I which I’d known about something sooner, someone else might too.

As always, friend, I wish upon all of you good mental health and lots of self-care!

Dogs Don’t Generalize and Neither Do I

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generalize, verb

gen· er· al· ize

an extension of a concept (or behavior) from a familiar situation to a less familiar situation

Training with Winnie has been an amazing experience so far. As a cat person, I’ve never really trained any animal to do anything. Granted, the cats will sit for food, but I think that they mostly figured that out on their own. But man oh man are dogs a whole different story.

When we adopted Winnie, I did what any new puppy parent would do- I searched out books by the best animal behaviorists out there. My favorites ended up being Patricia Mcconnell and Sophia Yin. I learned a lot from both of them about not only how to train a dog, but why I’m doing what I’m doing. Dogs brains work really differently than human brains, although I was to discover that Winnie’s dog brain is very much like my autistic brain in one major way.

We don’t generalize.

Here’s an example- I’ve spent most of my life in New York, which has made me intimately familiar with the MTA transportation system. But when I was a smaller human, a teenage size human, the subway was a big problem. The train line that my friends and I usually took was the Green Line, which is composed of the 4, 5, and 6 trains. Something important to note- sometimes these trains overlap. A 4 train and a 6 train can both stop at the same station. In this example, that station will be the 14th St/Union Sq. station. We usually took the 6 train to get there, but it was running behind, and the 4 train would be a lot faster. This is where the trouble begins.

Any New Yorker worth their salt will tell you that in this situation, the 4 train and the 6 train are exactly the same. Even my teenage friends would tell you that. They certainly told me. Multiple times. And time and time again, I’d tell them that they were crazy, then they’d say I was bad at directions, and eventually, we’d miss the 4 train and end up taking the 6 train anyway, and I’d spend the whole train ride trying to figure out they thought that taking the 4 train was the same thing as taking the 6 train.

I’m sure I don’t have to prove to you guys about how these things are different, but just in case, I made a list:

Things that are unknown about the 4 train:

  • If they have the old seats or the new seats
  • How many stops are between where I am and where I want to be
  • If they have the new digital maps
  • If the next stop announcement will be easy to hear
  • How to get out of the subway at the other side

Your average human being doesn’t think about these things. Their brains are able to generalize a familiar situation into an unfamiliar situation.

Now, dogs don’t ride subways, they do have the same issues generalizing that I do.

The way that people help dogs learn how to generalize is to provide them with variety and repetition. When we taught Winnie to sit, we didn’t just have her do it in our living room. We did it in the kitchen and in the bathroom, on our front porch and in the car. In Petsmart, Petco, Pet Supplies Plus, and every place we could find that had ‘pet’ in the name. She learned that ‘sit’ can happen anywhere, and now she’s prepared to do it.

When Winnie came home, I expected cuddles and belly rubs and a lot of picking up poop. I definitely wasn’t mentally prepared for the fact that she and I would share similar learning struggles. I like to think that it makes me more conscious of my own brain processes, and maybe even makes me a better trainer. Now, if only Winnie would give me as many people treats as I give her dog treats!

 

Waiting Waiting Waiting

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*this is a vent in the purest sense of the word. I’m hoping that talking through how I’m feeling might grant me some insight*

Frustrated. Angry. Confused. Scared. Upset.

These are all “feelings” words that describe me today. Okay, not just today. Maybe its more like a few weeks. Or a decade. Or my whole life.

I’ve spent the last decade or so living with a chronic illness, and I like to think that by this point I’m pretty good at dealing with all things health-related. I’ve now realized that this is a lie. I’ve been lying to myself without knowing it.

There are, in my opinion, two major parts to being ill- the Physical and the Mental.

When it comes to POTS, I’ve got both of them down. I’m used to my heart rate jumping high, I’m used to being dizzy, and I’m used to my body being unpredictable (POTS affects your Autonomic Nervous System, which controls everything from how well your body digests food, to how efficiently it pumps blood through your body). And when it comes to the mental part, I can handle feeling useless, feeling frustrated that my doctor isn’t calling me back or that test results are taking forever. I’m even used to not getting to do things that I want (mostly things that involve a lot of standing).

The POTS stuff, as I’m sure you’ve realized is just background for what’s happening with me now.

About 6 months ago, I started to experience dyspnea, which is med-speak for ‘I can’t breathe when I lay down”. Thanks to POTS, I didn’t panic. I’m used to weird stuff happening to my body, remember? I figured that whatever it was transient and would disappear as soon as it began. This, my friends, was tragically optimistic of me.

I’m going to gloss over the first pulmonologist that I saw, the one who told me that I had Respiratory Muscle Weakness, a pretty severe case, and then refused to call me back. For a month! It sure feels like a kick to the gut when the person who’s supposed to be taking care of your health thinks that you’re too complicated and pawns you off on someone else.

*deep breath*

The doctor situation is better now. I’ve got smart specialists who communicate well. I’m so thankful for this, but I’m still frustrated and angry and confused and scared and upset. If I felt this awful when I was getting my POTS diagnosis, then I clearly must have blocked it out because it is damn near unbearable.

It’s the waiting that really gets to me. I’ve spent this past few weeks on the edge of my seat, waiting for test results to come in, and for doctors to call me back. And every time a test does come back negative, half of me is overjoyed that I don’t have Myasthenia Gravis or something like that, but the over half of my brain whispers to me that at least it would have been an answer.

So that’s all of my insight, every last piece. And what have I learned? I know that I don’t handle the unknown very well (this should not be a surprise to any of us though). I know that doctors who treat me like I’m a nuisance make me a tiny bit homicidal. Lastly (and this is the big one, I think) I realized that for the first time in the entirety of my adulthood, I’m really happy with my life, and the idea of some medical condition fucking it up is what’s making me frustrated and angry and confused and scared and upset.

So I’m going to keep my self grounded. Maybe do some self-care. I will not obsess about something I can’t change. And most importantly I’m going to keep my fingers crossed for an answer that’s straightforward and easy to treat. Something the exact opposite of POTS.

And until then, I’m going to BREATH

 

Becoming: Autism Style

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I am a reader. At three years old I surprised my parents by reading full sentences out of nowhere, and the rest was history. These days, ebooks from the library fuel my need to read. The only downside to library books is that new or popular books can take months to come in.

I waited fifteen weeks for Michelle Obama’s book, Becoming. It took me a while to get through (thank you midterms), but I was really happy about a couple of things. One, although she spells it differently than me, her nickname is Meesh/Miche too. Guys, I’ve got a FLOTUS nickname! Secondly, there’s always the worry when you learn a lot about someone that it will ruin them for you, but I can confidently state that I still want to be Michelle Obama when I grow up.

Towards the end of the book, she was talking about Barack, and she said: “Being president doesn’t change who you are, it reveals who you are.”

I immediately recognized that this doesn’t only apply to presidents. My brain went straight to “diagnosis doesn’t change who you are, it reveals who you are.” And that makes sense, right? I know that when I was diagnosed with Autism, it didn’t turn me into an entirely different Meesh. It didn’t even alter the Meesh that I was. It just showed parts of who I was in a new light.

And I think that this was a fantastic thing. Because I could have looked at some of my personality traits that I now knew to be autistic, and suppressed them. I could have taken that attitude of ‘well, I might not have a choice in having autism, but I have a choice what people see of me.’ I could have. I think it might have killed me.

Instead, I celebrated. I am how I am for a reason. And I am not alone, there are others like me. I put my money behind the fact that the people who cared about me would keep caring about me. I never expected that strangers on the internet might accept me and care about me too.

This is not to say that I don’t get upset or frustrated. Hell, I get frustrated every day. Some days the world seems impossibly unfair, and it seems like everyone else can do things more easily than me. It seems like I’ll never achieve my goals. Some days I’m not sure what my truth is, and that hurts.

In one of the last chapters of Becoming, Michelle writes

“So many of us go through life with our stories hidden, feeling ashamed or afraid when our whole truth doesn’t live up to some established ideal. We grow up with messages that tell us that there’s only one way to be American—that if our skin is dark or our hips are wide, if we don’t experience love in a particular way, if we speak another language or come from another country, then we don’t belong. That is until someone dares to start telling that story differently.”

I don’t particularly care how American I am, but what struck me here was that even if I feel like people can’t see the real me, or that I’m not living up to expectations (usually ones that I’ve set for myself), it’s ok, because there’s one thing that I know I want.

I want to tell the story differently. I want to show people that there are many ways to be autistic and that none of them are tragic. Autism doesn’t mean life is over, it means life is different. And no matter what anyone says, we all still belong.

6 Ways I’m Getting Through The Semester

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I have been in college for 5 weeks now, and as usual, it has been a serious adjustment. My longest previous experience of being 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 was 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 ado, here’s what’s worked for me so far.

  1. Visual Directions

This one requires a buddy, but if you can visit your campus before the semester starts and have someone with an excellent sense of direction to help you make visual directions, it can significantly cut down on the amount of time you spend lost.

2. Hybrid Classes

I’m not sure hybrid is the word that all schools use, but a hybrid class is partially in person, partially online, and all autism-friendly. Spending 1 day a week in class instead of 3 has left me with less stressful social issues, and less sensory overload. Even just one hybrid class has made my traditional on-campus classes more doable. Now, online classes aren’t for everyone- it usually requires you to be more independent, but I love the flexibility, and to be honest, the fact that I can communicate on emails and message boards instead of face to face. Also, as a bit of a hangover from all that homeschooling, I prefer to teach myself things. If this is sounding good to you, I highly suggest seeing if your college or university offers hybrid courses as an option.

3. Color Coding

There are several ways that people learn, some people learn visually, some are better with Auditory, and others are kinesthetic learners-they learn using their bodies. Now me? I’m a hands-on learner for sure, but most of the time it’s not very convenient for me to touch everything I’m trying to learn. Luckily I’ve got visual learning as a back-up. Even though I can’t make pictures in my head like most people, visual information is fairly accessible to me. Hence, color coding. Each class of mine has a color, and I use colored pens and markers on my planner, my calendar, my to-do lists- all that organizational stuff. For me, it makes tasks and appointments pop out, so I’m more likely to process and complete them.

 

4. Built-in Self Care

I’m pretty sure that one of these days, I’m going to bring up self-care, and you’ll all revolt, and leave me here talking to myself. But until that day, we can talk about self-care! I find it extra important during the semester, because all of my brainpower is going towards learning and being social and trying to be flexible, so I’ve got no brain power to take care of myself. And I’m not talking overly complicated. You don’t have to book a spa day or get a massage. I go to my favorite used bookstore and browse for a while and buy a book (or two). On my long days, I treat myself to coffee. I bake cookies with Jess. I take time to snuggle with the cats. I think the best self-care is little, focused things. You know what you like best, so let yourself have it sometimes.

5. Quizlet

Hands up if you were that kid in school who always had a stack of note cards to study with. My hand isn’t up, because although I admired to organizational abilities of people who could study, I could never figure out how to make it work for me. Enter technology. I found the Quizlet app when I was looking for a way to put digital post-it’s on my phone. I still haven’t figured that out. Hm. Anyway, it’s a free app, where you can make your own decks, but you can also use other peoples. I can guarantee you that most low-level courses already have decks of information made. This, and the fact that Quizlet offers not only quizzes but games to help you learn information, made me a studying convert. Having all my decks on my phone means them when I can run through while I’m waiting in line, or in the car. Convenience, people, I’m all about convenience.

6. Habitica

The apps that I find most successful are the ones that give you a streak if you use it every day, and if you miss, you lose your streak. I’m talking about apps like Duolingo, or Memrise, or in this case, Habitica. Habitica used to be called Habit RPG, which I think gives you a better idea of what the point of it it is, but whatever. The concept is pretty simple, you put in things you’d like to make a habit, like brushing your teeth twice a day, or playing with the dog, or remembering to pack your lunch. If you do these things, you get points. You can level up, buy cool gear for your character, and hatch pet eggs. If you don’t, you break the streak and get noting. I find it a nice push to do things that are important, but not that important. (And if you’re worried that keeping your streak is TOO stressful, there’s a tavern where your character can rest without consequence.)

So here we are, everything that’s keeping me going this semester. I’m sure I’ll figure out new stuff, so look out for a part 2 of this post in Fall 2019!