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

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

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!

 

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!