The Sound of Silence

The sound of silence is incredibly loud, that’s what hearing aids have taught me so far. They have also taught me that my voice is also super loud, and doesn’t sound the way that I thought it did. My audiologist says that I’ll get used to it- I’m not so sure.

So today, if you didn’t already guess, was hearing aid day! It’s been a couple of months since the audiological testing that showed that I not only have severe Central Auditory Processing Disorder, but mild/moderate bilateral hearing loss. The hearing loss was…a surprise, to say the least.

It took all the time since then to order my hearing aids, which are Phonak (because they make the best FM Systems), and gunmetal grey (because they don’t make purple hearing aids for adults?!). For whatever reason my audiologist only seems to have appointments at 8 in the freaking morning, so I wasn’t particularly excited this morning when we started to do the fitting, although somewhere deep inside, I was incredibly interested in seeing what would happen and how things would change. Because this is a big deal, right? 6 months ago I didn’t even know that I had a problem, and here I am now, with hearing aids and an FM System.

So, the first thing about hearing aids is that they are so. much. more. comfortable than I thought. I was really worried, because I have small ear innards (I’m that person who uses the small sized earbuds) and sensory wise it can be a really sensitive area, you know? Imagine the doctor checking your ears 24/7- that’s what I imagined it would be like. And between the things sitting on my ear and the things stuck into my ear there are so many things that could go wrong. But they didn’t. Thank goodness. The only issue I’ve had so far is going to itch my hair a little too enthusiastically and bumping the receiver bit. Minor problems.

I’m not sure what to say about the actual hearing part of my hearing aids, I think mostly because I wasn’t really expecting a huge difference? Like, I know that I have hearing loss, but I’ve always seen the auditory processing part as my main issue. I figured if I didn’t notice that there was hearing loss in in the first place, how bad could it be?

turns out, bad enough

Guys, everything makes noise. I spent my appointment tapping on things, rubbing things, definitely-not–on-purposely dropping things. I got home and there was so much background noise, which I’ve now been informed is the dishwasher and the heater. Also, the dog snores!

So it turns out the hearing aids work. You can say ‘I told you so’ if you want right now. You can also tell me that when you’re autistic, hearing more is not necessarily a good thing, I’ve already figured that one out. Do you ever feel like something good can’t just happen, there’s gotta be a downside? Maybe that’s life.

Or maybe I’m just being melodramatic. It’s about a 50/50 chance.

So that’s the hearing aids, now onto the FM System. This is meant to target the auditory processing disorder, which, as we discussed earlier, gives me the most trouble, especially during the semester when I’m in class all day. This system is easy, my professors wear a pen sized microphone, and it transmits directly through a little receiver to my hearing aids, it’s pretty foolproof! Between this and having a note-taker I’m really optimistic about school. Although it does seem like I said that before the beginning of the last semester, and look how well that went.

I don’t want to sound like these things are the worst thing that has ever happened to me, because that’s so so far from reality. The truth is, that I have trouble with change, and this is a huge one. A huge one that involves sensory input. Double trouble.

So for now, here’s the plan

  1. Wear hearing aids for small amounts of time, and stop before I get overwhelmed
  2. Try to be curious about unexpected noises instead of being annoyed
  3. Talk a lot so that I’ll get used to the sound of my voice faster
  4. Avoid situations that might be overwhelming (sound wise) for a few days
  5. Don’t let sensory overload affect the rest of my life

A bonus sixth point is to not drive my wonderful, caring, understanding wife absolutely crazy by being inflexible about everything, just because my hearing aids are driving me absolutely crazy.

Well that’s it, that’s the whole hearing aid experience so far. I’m already certain that the good parts of the hearing aids are very good, and that I would like to have them all the time. For example, Jess can talk to me even if I’m not facing her- and I can still understand what she says! I’d like more of that, please. On the flip side, I can hear the heat and the dishwasher and people coming down the steps outside and the dog chewing on her bully sticks, and that is just SO MUCH all at once. They say that neural plasticity takes care of this sort of thing after a few weeks, basically I’ll still hear it but it won’t be at the forefront of my attention all the time, thank goodness.

So for now I’m going to hold off making judgements, and just enjoy the process of experiencing the world in new ways. Loud ways.

On next weeks episode of What’s that Noise? our contestants search for 45 minutes only to find that the humidifier beeps! 

 

Online Communities Project Results!

So I won’t keep you guys in suspense for a second longer than necessary:

I got an A on my final presentation!

It was terrifying. Earlier this semester I had to do a presentation, and the morning of I got so stressed out that I found myself with a case of the non-verbals. So understandably, I was pretty nervous about this presentation. For one, I was supposed to talk for 6-8 minutes, and to be entirely honest, I can go for whole days not spending 8 minutes talking! I also respond to public speaking situations by completely abandoning whatever I was going to say, and substituting it with whatever I’m thinking. I accidently came out as Non Binary to a room full of people once. That was…interesting. Mostly though I was nervous that my audience (which consisted of about 10 freshmen students and 8 middle aged adults, plus a professor) wouldn’t connect with the information. I mean, does the average person care about Online Communities?

It turns out, yes!

It was like the end of a sports movie. I was in the public eye, sweating a lot, and Eye of the Tiger was playing (in my head, at least). I get to the end zone and people started to clap! Students gave me a hug, and a handshake, and all of a sudden it was time for the interviews.

Guys, these people were actually listening! They asked intelligent questions, and the conversations moved from Online Communites, to Communities in general, to urban sprawl and gentrification. They. Stay. After. Class. I felt like a goddamn superhero.

But, I couldn’t have done it without everyone from all of my Online Communities stepping up and providing me with some truly personal and insightful answers. So, while I wish I could send everyone Christmas cookies, I think the postage would be through the roof, so I’ve got the next best thing.

Here are the results of the survey.

You can see the raw numbers and the short answer questions, plus charts from all of the multiple choice. I found it fascinating, and I hope you do too!

P.S. The image up top is a word cloud made from all of the individual answers from the question “what communities do you identify as a member of?” I love the affect that the visual has!

Online Communities Project

Hello Friends!

I’ve been more absent than I’d like over the past few months, but it’s been for a good reason- I’ve been back in college!

Now it’s finals time, and I have a favor to ask.

I’m taking an Interpersonal Communication class this semester (and let me tell you how bizarre that’s been as an Autistic Person), and I have to do a final project on a types of communications. Since I already spend a large amount of my time online, I realized that I had a built in interest sitting right in front of me, and I’ve chosen to examine how people Create and Maintain Online Communities, totally appropriate, right?

Now, here is what I’m asking from you, my favorite online community-

I need ‘original research’ as part of my project, so I’ve created a survey, and I need participants! It’s only 10 questions, and about 5 minutes long, so if you’d be open to taking the time, I’d really appreciate it!

I can’t offer you much except the results of the survey, if you’re interested, but I promise either way it’ll be a totally painless experience.

Thanks again, and wish me luck on finals week!

Online Communities Survey Link

Top 10 Books I’ve Read This Year

So I know that the year isn’t over yet, but something else is- I hit my reading goal for the year! I started out this year doing the 52 in 52 challenge, which is where you set a goal to read 52 books (one a week) in 52 weeks. Now, I hit 52 books in June, and I upped my goal to 78 books, which comes out to about 1.5 books a week, and this week I finished book #78! Now of course this doesn’t mean I’m going to stop reading, but it’s a nice feeling to have hit a concrete goal.

My favorite books from this year have been all over the place, genre wise. I am usually drawn to science fiction and fantasy, but to make this challenge more interesting, I pushed myself to read books that I might not have necessarily picked otherwise. Genres like Biography, and Classics, and Literary Fiction. And it worked great! I’ve already started thinking about what new categories I can add to next years challenge.

So, here are my faves from this year. I reviewed and gave most of them 5 stars on Goodreads, which is a good indications of how much I liked them, given that I tend to get stressed out when writing reviews. In general I only review books I really loved, or really hated.

So I’m going to try and do something that’s really hard for me- I’m not going to be long winded. So, if any of these descriptions go over 4 sentences, feel free to publicly shame me in the comments.

  1. A Man Called Ove: A theme that ran through this years book choices for me was grief, and A Man Called Ove managed to treat the subject with tenderness or with humor. Ove is a grumpy old man who’s recently lost his job and his wife, and all the wants is for everyone to leave him alone so he can kill himself in peace. Did I laugh- yeah, did I cry- oh yeah, have I now read almost everything that Fredrik Backman has ever written- absolutely, and that’s one of the highest praises I know of.
  2. The Song of Achilles: Did you have read Greek Mythology in school? And if you did, did it come off as being super gay? If so, then The Song of Achilles is the right LGBT+ coming of age novel for you! This is yet another grief themed book that treats love gently and beautifully, and tells an interesting side of the Helen of Troy story.
  3. The Long Way to a Small Angry Planet: I loved this book, mostly because it talked about non sci-fi in a sci-fi setting. I mean c’mon, what science fiction story discusses pronouns, and AI romance, and space autism? I’ve found in my life that sci-fi page turners are rare, but this was a fast and fun read, while will having excitement and emotion. It’s always a good sign when I don’t want a book to end, but I’m also impatient to get to the sequel.
  4. East of Eden: So here’s the deal- I read Steinbeck in school (Of Mice and Men, and The Pearl, if I remember correctly) and I was never a fan. But I made myself a goal to read more “classics” this year, and I swear the internet has a hard on for East of Eden, so I figured why not. It took more than a hundred pages to get into the story, and even when though I liked the story, I only rated it 4 stars on Goodreads. And then I thought about it constantly, for a whole week, so I finally gave in, went back, and rated it 5 stars, so my advice for you is to stick it out, love Lee, and just accept that it’ll take awhile to sink in.
  5. A Monster Calls: Once upon a time, there a boy whose mother was dying, and one day a monster came out of the woods and told the boy that he knew the boy’s greatest wish, and if the boy could figure out what his desire was, then the monster would grant it. A Monster Calls is a beautiful story about love and grief, something I’ve been struggling with for the last few years, and when I finished this book, I felt a weight lifted. This book is short, and may look like a kids book, but it definitely is not. If you can, read the illustrated version, it’s worth it.
  6. The Rosie Project: This book was a huge surprise for me, all I knew that it was a “funny love story”, and I think that I know why- it’s because neurotypical people were the ones writing the reviews. Nowhere in the synopsis or the reviews was autism mentioned, but within the first few chapters I knew that the protagonist and I had a lot in common. I never get to read about people like me, and never in the tender way that the author writes about Don. When I finished, I made my wife read the book, so I could ask her if she sees me in the loving way that the book shows, and she said yes!
  7. The Hate U Give: I think that I’ve mention that I’m from St. Louis, which after Michael Brown’s death in Ferguson, MO (which is in North St. Louis) became an important location for the Black Lives Matter movement. I wasn’t a teenager at the time, but I was (am?) a Biracial person living in a city with an embarrassing amount of police corruption and violence. When I finished this book, I declared that it should be required for protesters coming into cities, because it makes you think about what can happen if you’re not responsible, if you jump to conclusions, or don’t respect the home communities. It made me think, in a good way- and I’m always happy about that
  8. The First Fifteen Lives of Harry August: Imagine if, as a child, you learned that you have been reincarnated, but instead of coming back as something awesome like a narwhal or a corgi, instead, you came back as you- over and over and over. I enjoyed The First Fifteen Lives- it read with the ease of a thriller, the page-turned quality of a thriller, but I didn’t feel kind of empty at the end of it. At the beginning I thought that Harry living his love over and over again might get old, but the author skillfully manages to avoid that. Lastly, the antagonist is Moriarty-like in the best possible way, which is hard.
  9. I Contain Multitudes : This is my only non-fiction book that made it onto my Top 10 this year, which is kind of unusual, but luckily, I Contain Multitudes totally holds its own. Even if I wasn’t someone with a crappy digestive system (and I totally am, you might even say that it’s shitty) the author is able to take a subject like gut bacteria and manages to produce a book that’s fun and interesting and easy to read. I promise, you’ll never take your biome for granted again!
  10. The Fifth Season: This book is difficult to talk about, because almost anything I can say might be a spoiler. What I can say is this- The trilogy that this book is part of made history for being the first trilogy to have each book in it to win a Hugo Award, which is s big deal in the fantasy world. The Fifth Season, sort of like …Long Angry Planet finds a way to talk about important real life things in a fantasy setting. Towards the end of the book I was literally getting goosebumps, that’s how awesome this book is.

So here they are, my favorites from this year! My to-read list is out of control (911 books and counting), but I’d still love to hear any favorites that you have! Also, if you’re a Goodreads user, you can find me here, if you want to connect!

Yes, But

I know that we all have things that we did in high school that we’re a bit embarrassed of. I definitely have a bunch, that range from mildly embarrassing to totally mortifying, and one those things that I did was improv comedy. Part of me mortified about it, but there’s something that improv taught me that has actually turned out to be useful in real life, and that is the concept of ‘yes, and’.

You see, improv comedy, unlike sketch comedy or stand up comedy, is a team effort. When it’s your turn to speak, the goal is to give your teammates something to play off of, so the cardinal sin of improv being to not leaving them something to work from. Hence, the ‘yes, and’ rule.

‘Yes, but’ works well too. As long as you’re giving your scene partners something to elaborate, you’re doing improv right!

Now I’m sure you’re sitting in front of your screen wondering what improv comedy has to do with anything, and if you’ll stay with me through the Story of the Audiologist’ I promise that it’ll all make sense.

Once upon a time, I was at a conference, and I discovered the magic of captioning. For the first time ever, I could understand everything that was being communicated. I remembered what had been talked about, and my brain didn’t hurt by the end of it.

So, me being me, I started researching, and what I can up with was Auditory Processing Disorder. APD means that while your ears can hear just fine, your brain has a lot of trouble interpreting the input.

It explained a lot, like why I can’t talk on the on the phone (everything sounds garbled), and why I can’t really hear people people are saying if they don’t face me when they’re talking (turns out that reading lips is pretty effective!). And don’t get me started on how distracting facial hair is.

So I talked to my team, and we decided it couldn’t hurt to get tested, given how much trouble was having following my professors in lectures, and after a two month wait, I finally got to see the Audiologist!

The above sentence may have implied that I was excited on the day of my appointment, but that is incorrect. It was a 7:30 am appointment. And it was 3 hours long. The testing was exhausting, even with my venti coffee. Although I have to say , the tests were fascinating. They tested if I could put syllables together to make words, if I could tell which ear sound was coming in, and if I could pick out words when they were layered with words or static. It’s totally the fascinating science-y type thing that I’d love to watch happen to someone else.

These sorts of tests need to be scored, but I did poorly enough that the Audiologist was confident saying that unofficially, I had APD! Amazing news, because a diagnosis is always necessary to get help.

I thought we were all set to go (and after 3 hours I was soooo ready to leave), until I realized, to my horror, that she had BUT face, and said that we also need to talk about something else.

Turns out that one of that tests that I took was a standard hearing screening, and it also turns out that I didn’t do so well on them. She told me that I had mild/moderate bilateral hearing loss. She also recommended hearing aids.

Hearing loss WTF

Hearing aids WTF

Turns out scaring and calcification on your eardrums can really fuck with your hearing. And that hearing loss makes Auditory Processing Disorder exponentially worse.

3 years ago thought I was pretty normal, now ASD, CAPD, Hearing Loss, probable Learning Disability (did I mention the Testing coming up in January?)

I feel very validated, but also kind of freaked out. All of these things are new, and I don’t handle new very well (but I’m sure you knew that). I’m excited to get my new tech, but I know I’ll be really frustrated before anything gets better.

Anyone with hearing loss/hearing aids/FM systems have any experiences they’d be open to sharing?

Winnie the Service Dog

Sorry I haven’t been around too much, school has been getting busier and busier as the semester goes on, and wait, there’s more!

I’ve had some trouble getting the college to stand  behind my accommodations, aka, they saw my diagnoses, declared that there were lots of things they do to make my educational experience more fair, and then tried for months do avoid doing those things.

But sure that’s not all?

Stay tuned next week to see the post about the shocking end to my trip to the audiologist!

But seriously, you clicked on this because you saw the title, and I’m fine with the fact that you’re only here for one thing:

My girl, Winnie.

Jess and I have been talking for months now about the idea of a service dog. The discussion started back in August, in the first few weeks of classes, because she realized that she was getting worried about me being away from her all day, which is legitimate, because while I do really well in public, I depend on her a lot to be my backup.

She can tell when I’m about to faint, when my blood sugar is low, and that’s just the medical reasons. She can tell when I’m overstimulated many minutes before I can, and can spot a meltdown from 100 paces. This means that she can intervene before I accidentally get lost or hurt myself. I don’t like to admit it, but things eventually can and do go wrong if I’m on my own without any backup.

Hence the dog. We combed through lists of tasks services that trained dogs can provide, to Autistic people, people with physical health, and people with mental health issues, and we quickly realized that I’d be safer and that she’d worry less if I had a service dog.

There was only one problem.

Going through a company that trains service dogs is hella expensive. And charities that provide dogs to autistic people? Really only cater to kids. So we made a really huge and life changing decision- to train one ourselves. And don’t look at me like that guys, there’s a lot of resources out there, and we live in a big city with lots of resources! And if she doesn’t have what it takes to be a service dog, we’ll certainly love her anyway!

So, please forgive me if there’s a bit of extra puppy talk in the near future, but I also hope that as I learn about training Winnie to be a service dog, so will you! And if you think that Winnie is just too cute not to see all the time, we’ve made her a Instagram account. You can find her by searching for winnieintraining, or by clicking here @winnieintraining.

(and what the hell, here’s one for the road)

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!