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?

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!

Top Surgery Recovery: A Month in Pictures

My god does it feel like forever since I’ve been here. It hasn’t really though, it’s been almost exactly a month, and do you know how I know that? It’s been 4 weeks since my surgery!

Now between the recovery and the pain meds and the inevitable POTS flare, blogging has been low on my priories list. I have however, been taking a lot of pictures.

*warning* Some of these are of my bandages and incisions, so if you’re squeamish or avoid NSFW stuff, I’d stop here.

Are we all ok from here out? Excellent! Here we go!

This is 24 hours after my surgery. The bundles on my grafts stayed on for another 6 days!

We have a tradition that I get a new stuffed animal after a surgery. This is Shel the Unicorn, who is very soft, with a super stimmy horn!

Not to be outdone by Shel, Angel checked in on me whenever he was allowed. The cats had to live in our office for a few weeks, so they wouldn’t accidently disturb my grafts or my incisions. 

You may not be able to tell from my face, but I so excited because my drains are coming out- and that means that for the first time in 9 days, I can shower!

Here I am discovering one of the best parts of Top Surgery: being able to look down and see my feet without boobs in the way!

After this type of surgery, you have to wear a surgical compression garment, which are sensory hell (especially knowing now that they game me the wrong size!). This picture was taken when I was finally able to wear an athletic compression shirt instead, and what a relief it was!

Chronic illness doesn’t care about gender or surgery, so this is my modified Physical Therapy  set up, so hopefully my POTS will continue to improve!

I hate to end on a depressing note, but reality is what it is. One of my grafts failed, and that is both painful and upsetting. The healing is slow, and we won’t know what it will look like until it’s totally done.

That was quite a ride, eh? And it’s still going.

My sad, rejected graft still has a lot of healing to do. I’ll also have to decide how I want to deal with it if the damage is super obvious.

I also start classes next week, I’m finally finishing my Bachelor’s! It’s been 12 years since I’ve been on a campus or in a classroom, so this should be interesting.

Look forward to ‘Autistic Adult Student’ posts coming soon to a blog near you!

10 of my Favorite Things

So here’s the deal, my friends, I can’t lift more than a coffee cup, I haven’t showered in a week, and I’m still kind of high on painkillers.

So. I’m going to cheat just a bit and make this List Wednesday about some of my recent favorite things. I hope you’ll understand, and possibly even find a new favorite things

1. Chocolate Bundt Cake: It can be hard sometimes to find a recipe that converts well to gluten free, but you’d never guess that this cake wasn’t written that way. We use Cup4Cup gluten free flour blend, and it comes out moist and fluffy and everything you’d ever want in a Bundt cake!

2. Shel the Unicorn: I’ve had a few surgeries over the years, and they all have two things in common: afterwards I get pancakes and a stuffed animal. Shel the Unicorn (and her relative Dax the Sloth) come from the Manhattan Toy Company, and are about the softest stuffies I’ve ever had. There is nothing better than having a new friend to snuggle after you have an operation.

3. 3DS Kingdom Hearts: The original Kingdom Hearts for ps2 was my first RPG, and it holds a very special place in my heard. About 15 years after Kingdoms Hearts came out, we’re finally going to get Kingdom Hearts 3. It’s been one hell of a wait. But while we’re waiting, Nintendo put out a new 3DS version that I’m having so much fun with. New worlds and old favorite characters are making the wait much more bearable.

4. Overdrive App: I have been a library addict since I could read, and the only thing that makes free books and other media better is not having to go to the library at all! The Overdrive App lets you check out eBooks and audiobooks out from your local library without ever leaving the house. Plus they sync with kindles, tablets and smart phones so you can read and listen wherever you want!

5. The Golden Compass Audiobook: The His Dark Materials trilogy has been one of my favorites since childhood, and oftentimes the problems with loving a book so much is that the audiobook is never as good as it is in your head. This one is an exception. The author, Phillip Pullman is the narrator, and it has a full cast that sound very close to what I expected. We listened to this on the way to and from Kansas City and it was perfect road trip material!

6. Simple Gel Cream: I thought when I made it to adulthood without acne, I was in the clear. That was a lie. Here I am at 30, with my face bleeding every time I touch it. Washing my face is sensory hell, as is lotion, but I’ve been trying to find things that I can tolerate, and this moisturizer is it. It isn’t a weird texture, it sinks in quickly, and there’s minimal smell. If only all skin care was this easy.

7. Queer Eye on Netflix: Whenever I watch an episode of Queer Eye, by the end I’ll inevitably end up with dust in my eye, because I’m definitely not crying. I’m old enough that I watched the original Queer Eye in high school, but this reboot is miles ahead of it. Yes, there’s still a wardrobe changes and new recipes and a big reveal, but the reboot takes more of a holistic approach, helping the Guy live as his best self. The original focused on Straight Guys, but the new seasons so far have has a woman, a gay guy, and even a trans guy!

8. Hardback Game App: I think I may have mentioned my love of board games here before, and the only thing better than board games is board games on the go. A lot of board game producers are starting to make app versions, which is great, because they’re way cheaper and much more portable, and let you play online or against someone sitting next to you. Hardback is like Scrabble on steroids, and for less than 5 bucks, it’s my favorite new game.

9. Speed cube: I learned how to solve a Rubik’s Cube almost 10 years ago, and since then have been using it as me “fun facts about me” fact. It also makes a great stim toy. I used to buy Rubik’s brand cubes and take them apart and sand them down, and then lube them up with silicone, in order to make them faster and smoother. But no more! Paying the extra couple of bucks for a speed cube makes so much difference, I can’t stop playing with it, and it glides like butter.

10. Angel: My cats have had to live in the office while I’ve been recovering, but Angel is gentle enough that he’s een allowed supervised visits. It’s lifted my spirits to have him snuggle up against me and purr like a motor.

So. These are a few of my favorite things. As always, I’d love to hear about yours- it’ll give me something to check out while I’m couch-bound!

5 Reasons Why My Gender is Complicated

Ladies, gentlemen, and all genders in between: I have glorious news!

After years of dysphoria, lots of therapy, and jumping through insurances’ hoops, I have been approved!

For what, you ask? For surgery- Top Surgery! Finally, twenty years after developing this painful and unwieldy chest that never felt like it was mine, as of yesterday (for you, I’m writing this on Sunday- Greetings, from the past!) will be rid of them. Good bye boobs, and good riddance.

After years of stressing about what my gender is, or should be, I have come to the realization that gender is complicated, and mine (and yours!) will never be the same as anyone else’s.

So I give to you some of the reasons why gender is complicated.

1. Gender is a social construct: So gender seems like a pretty straightforward thing, right? From a young age, we’re told that girls wear pink and play with dolls, and boys wear blue and earn $0.18 more per dollar. But for me, it’s not that easy. Honestly, I didn’t even think about it until puberty, when everyone suddenly had opinions about what I should be like. I was a girl, because people said I was-that’s it. Each society gets to define what gender is, and while most western societies only have two: Boy and Girl, other societies have more. I’m not particularly interested in stressing about gender, I am me, and it doesn’t matter what my body looks like. I was Nonbinary with boobs, and I am now without them. I’m Meesh, and I’m just trying to make my body fit my spirit.

2. There’s a lot of gender vocab: Trans, cis, nonbinary, demi boy, demi girl, gender fluid, genderqueer, neutrois. These are just some of the language used to talk about gender these days, and it’s great! Because it’s so important to have an identity that fits you. It can make things complicated, because new terms are being developed, and a lot of them aren’t standardized. For example, nonbinary is a very broad term- it’s definition means that it includes anything outside of the gender binary, aka, anything that isn’t male or female. In fact, if you look at all the terms that come after it, they all fall under the nonbinary umbrella. That means that people who are nonbinary can identity incredibly differently. Nothing wrong with that, just another complication.

3. Body dysmorphia vs gender dysphoria: I come from an Eating Disorder background, where body dysmorphia runs rampant. Most people with eating disorders experience this to some degree- when they look in the mirror, they can’t see their body for how it is. They see fat even when they’re underweight. This phenomenon is surprisingly similar to gender dysphoria. When I look in the mirror and see breasts and feminine curves, I feel anxious and detached. Both body dysmorphia and gender dysphoria make me hate my body, and it can be hard to tell which one is causing my distress. Do I had my curves because they make me feel fat, or because they make me look like a girl? Being able to tell the difference is vital for my mental health, but trying to figure out which is which is complicated.

4. Them/them/theirs: Oh pronouns. How can something that seems so simple get so complicated so fast? Traditionally, the English language only has two pronouns: she and he. And when the majority of people only identified as one of two genders, the pronouns worked fine. But now that we know that there are many genders, he and she just aren’t going to cut it. But what will the new pronouns be? Can we just make shit up? The answer is yes, we can totally make shit up, which is how we got pronouns like xe, sie, and zir. The other option is to borrow an already existing pronoun, in this case, they. I use they/them/their pronouns, mostly because they’re easy to explain, not because I’m drawn to them, or because they fit me perfectly. The grammar snob in my hates my pronouns, it screams that you can’t hit a plural pronoun for a singular person. I agree, but since I can’t stand being called ‘she’, ‘they’ will have to suffice for now.

5. Neither here nor there: Once upon a time, there were only two gender identities, Cis, and Trans. You either identified with the gender that was assigned to you at birth (Cisgender), or you didn’t (Transgender). In recent years, we’ve begun to understand that there is a lot more to gender than the trans/cis binary. That there are genders that exist in between them, or in some cases, completely outside of them. This is a fantastic development for people like me, who thought that even though they felt uncomfortable in their bodies, that they must be Cis, because the Trans label just didn’t fit. As fantastic as this is, it can leave NBs like me in a crappy place- it’s easy to feel like we don’t belong anywhere. Many people, myself included, want to feel like there are other people like us, who share our experiences, and can be a resource to us. Actually, that’s a lot like the Autism community too, isn’t it? I guess most minority groups have a lot in common. Feeling like I don’t belong in Trans spaces, or in Cis spaces, can be really lonely. I’m lucky to have 2 other NB people in my life, but even so, sometimes I just want slide easily into a clearly marked box.

So here we are! You, reading on your screen, and me, propped up on the couch and dozing on painkillers. It’s a little weird to be putting this together before hand (although here in the past, I am still on the couch).

I may not be able to respond for a week or two, but I’ll still ask the question. Is there anything about you that is Complicated? How do you handle it?

If you read this far down, send some virtual good vibes my way!

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.