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!

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.

 

5 Reasons I Love Musical Theatre

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

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

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

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

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

I’m a Quitter

It’s official. As of Saturday, I will officially be a non-smoker.

I’ve been smoking on and off since I was 16, and while I’ve quit before, it’s never lasted more than few years. I think a big reason for that is because smoking becomes such a satisfying routine.

A goodness knows that I thrive on routines.

So I’ve been thinking about quitting for a while now, but I’ve been having trouble doing the actual, you know, quitting part. I’ve been slowly decreasing the number of cigarettes that I smoke a day, but I’ve hit a bit of a wall. It wasn’t that I didn’t want to quit, but I was having what I think of as motivation issues.

Until last Saturday, that is. Since then, I’ve had tons of motivation.

I’m having surgery in July, and since it involves grafts, the surgeon requires me to not smoke. Fun fact: smokers have a 20% more chance of graft rejection than nonsmokers, which is good enough motivation for me to push through the discomfort and just quit.

Back to the routines. I smoke at specific times of day, every day. The act of smoking is so closely tied with things like eating meals and leaving the house that I have trouble separating the two. These sorts of activities are transitional, and that’s an Executive Dysfunction thing that I really struggle with.

So, the struggle begins to find replacement activities! After much consulting and debating, I’ve got a plan that I think will work. I’m going to use both distraction and sensory replacement to keep myself honest. Enter my Gameboy and coffee flavored hard candy. Instead of smoking before meals, I’ll take 5-10 minutes and play a game (Mario-kart and Mario party, mostly) and suck on hard candies to fulfill the oral fixation.

I’m not sure how this is all going to go. It looks good on paper, but goodness knows that changing routines is far more difficult than it should be, at least for me.

Wish me luck, and please excuse any rant-y posts while I adjust to all the changes!

P.S. If you’ve ever quit smoking and you have any tips, please let me know!