Skipped

Guys, I did a thing. A big thing (at least I think so!). I signed up for Advocacy Training!

Let me back up a little. 2 years ago, I started volunteering with an organization that does programming for people with developmental disabilities and their families. I’ve really enjoy it, I mostly work with kiddos, both neurodiverse and neurotypical, and it makes my day. Well, week, actually, but that’s semantics. But anyway, what I’m trying to say is that they’re pretty good people

So when I got an email about their advocacy training, I was immediately interested. I’ve been slowing trying to build up the skills I need not only to advocate for myself better, but my community too. And this email seemed really promising! They didn’t just advertise the training for families and volunteers, but for self advocacy too! Do you know how rare that is?  I was looking to sign up for a midwestern region Autism Conference, and they had registration for professionals, for educations, and for parents. Can you see whose registration they’re missing there? I’ll tell you- OURS.

But flyer didn’t do that. It said right there on the top that self advocates were being included and I’m fairly certain that’s how I managed to momentarily punch through my anxiety and hit the “submit registration” button. It helped that Jess could come too- you know, the buddy system and all.

So here I am Monday night, the anxiety about doing something new and having to out myself has been brewing for a few weeks now. My name isn’t on the sign in sheet, which isn’t a problem, it turns out, they just add me on. Then we go around the circle and do introductions- our names and why we’re here. I was a little preoccupied with worry to really care why anyone else is there. So we go clockwise, which means that Jess is going before me. This isn’t ideal, because it’s a lot easier for me introduce myself, and then have Jess go “I’m with them”. Or something like that. She usually makes it sound nicer. She’s got mad skills like that.

So Jess goes first, and says something along the lines of her “often acting as my voice”. Which is fairly accurate, given that she handles things like phone calls and making appointments. Plus all the times that I’m having auditory processing issues or am having a low verbal communication day. So  it wasn’t that what she was saying was wrong, it was the way it was interpreted.

Because the trainer assumed I was nonverbal

And he skipped me.

Guys, that felt like shit. It felt like he looked right through me, and assumed that I had nothing to contribute.

I froze, and Jess reacted (which is usually the way of things), and the guy said he was sorry, that he was confused about what Jess had said. Except that I’d had a conversation with him before the training started. So either he’s oblivious, or he made a wrong assumption and didn’t want to admit it.

So needless to say, I was pretty angry for the next hour or so. The trainer made sure to ask my opinion regularly, and I’m perfectly willing to admit that I was pretty snarky. And while my snark game is strong, I’m also incredibly non-confrontation, so I snagged Jess’s car keys and hid in the care while she talked to the guy.

She said that he felt bad, that he wanted to include me, that he wanted to hear my opinions. And I’m sure that he does, really.

I guess it’s like this: I’m always so worried about coming out of the autism closet, and usually, it goes. Worst that happens is some overly personal questions, or me having to pretend to be interested about someone’s cousin’s nephew who also has autism. Nothing really bad has ever happened. That’s why being treated like I wasn’t even there was so surprising. Being invisible to the person who’s supposed to teach me how to advocate for myself has dropped a ball full of contradictions in my chest and it’s wriggling with anxiety.

So I bet you could have guessed, but tl:dr I’m going back for the next session. Partially because I already committed to this, partially because I think this information will be really useful, and partially because I learned that neurotypical people aren’t like me when it comes to communication. They don’t plan ahead and sometimes it bites them in the ass, like what happened on Monday. I’ve learned that sometimes I need to give them a second chance, because that’s what I’d want them to do for me.

Stay tuned in November to see if the trainer wasted their second chance and had to face my wrath!

 

Until Then, I Flap

Today my anxiety is coming out through my head

It bops and sways without even asking my permission first

If it had asked, I would have replied ‘no way José’ not because its name is José, but because when I’m anxious I speak solely in phrases

Today my anxiety is coming out through my hands

They touch and feel everything even if it is wet or or sticky

Sometimes touching things feels good, and sometimes it feels bad, but my anxiety doesn’t notice the difference.

Today my anxiety is coming out through my feet

They tap and skip and don’t care where they bring me

I wish for stillness, but instead I pace my living room until my soles ache and even then I can’t stop

Today my anxiety is overlapping with my autism

One at time is hard enough, but today I have both

I’m tired of stimming, of echolalia, and of obsession, but today my brain doesn’t care

Today I am tired, but I am practicing self care so that tomorrow will be better

Until then, I flap

Just Take Me Back to Who I Was When I Was Younger

“Just take me back to who I was when I was younger” A Great Big World

I turned 30 this year, and I’ve started to notice that people my age are feeling old (in a bad way). And I think that’s pretty standard for your thirties. Your twenties are for making mistakes and finding yourself, and you get through that all of that and come into your thirties only to find that you’re *gasp* old.

It hits some people harder than other, I think. From my observations, people who had really positive teens and twenties have a harder time leaving them. I’m talking about the folks for who the phrase “high school is best years of your life” applies. And this isn’t a bad thing! I mean, who can judge someone for having a positive experience, right? All I’m saying is that I was definitely not one of those people.

My teens were filled with a chaotic home life, trouble with teachers, coming to terms with my queerness, and the beginning of the mental illness that would define my twenties. My twenties, as you might have guessed from the previous sentence, were filled with breakdowns. I had an Autistic Burnout which left me with a slew of sensory issues. I cycled from being incredibly productive, to not leaving the house for weeks (if this sounds familiar, I suggest you check out Bipolar Disorder). I spent two years in higher level care for an eating disorder, and also three psych hospital stays during that time.

I clawed my way out of my twenties, and now that I’m free, I’ve realized something. You couldn’t pay me to be young again. I like being my age, so many good things have happened over the last year or two that makes me so happy to be where I am in life.

The thing that changed my life was my Autism Diagnosis. Guys. Ladies and gentlemen, dudes and dudettes, knowing changes everything, and the number one thing that it changed was how I viewed myself. I had been told (and so I believed) that I was smart but lazy. Feeling that way about yourself does a number on your self esteem. So when I found out that I was not in fact broken, but Autistic, something changed. Not overnight, obviously, fast than I had expected. My diagnosis also gave me access to services like Occupational Therapy, where I’m learning strategies to help me function as my best self.

So here I am at 30, and how am I spending the first year of my decade? I’m in college, for the first time in many many years. I am active in my church, and I volunteer with an organization that serves children and adults with developmental disabilities. In a few weeks my wife and I celebrate our 10th wedding anniversary, and our relationship is so strong (partially because we’re awesome, and partially because we’ve had a lot of therapy, individually and together. I’ve been working on my gender identity, and had top surgery to help me feel like I fit in my body. Due do a procedure and a new medication for my POTS, I am so far able to do more things (museums, the zoo!), and be so much more active (riding bikes, rock climbing!)

And that is just this year. For the first time in forever, I’m looking forward to what’s coming. And I’m not one of those blissfully optimistic types that assume everything will always be perfect. I have Autism, and sometimes, that sucks. I have mental illness, and sometime that sucks. I have a chronic illness, and that almost always sucks. But when these things are well controller, I can work around them. When I am a stable human being, I’m better prepared for issues that may come.

I definitely don’t want to go back to who I was when I was younger, but I do wish I could leave past me a note saying “don’t worry, it won’t always be like this.”

 

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!

 

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!