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 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 are 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 judgments, 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! 

 

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 are 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 other 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, earplugs, 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!

Let’s Be Practical

It all started with a Buzzfeed quiz: Eat Your Way Through Europe and We’ll Reveal Your Dream City! I got Barcelona, and while I was reading through the blurb describing warm oceans and sea breezes I thought to myself “you know, I’d love to see Barcelona some day.”

But let’s be practical, I probably won’t.

I think the most heartbreaking part of being diagnosed as an adult is that I often still think that I am neurotypical. And since I’ve spent 28 years being bombarded by the idea that I can do anything I want, I see no reason why I can’t. As long as I Try hard enough.

I think we all know though, that autism doesn’t work like that. Now I’m not implying that we shouldn’t try! Yoda said “do or do not, there is no try”, and I disagree with the little green bastard because I think “try” is not a placeholder for “do”, I think trying is an action in its own right.

And because of this, I subscribe to the school of Realistic Trying. To me, this means that I’m never going to stop pushing forward and doing things, but I’m going to be realistic about how I go about it. Let’s take Barcelona. Barcelona is in Europe. In Spain. I live in St. Louis, which is 4644 miles away, smack dab in the center of the United States. And thanks to the myth of Trying Hard, a large part of my brain still thinks that traveling that far is doable.

Let’s make a quick list of barriers to travel:

  1. I have a routine, and if it is not followed, it will eventually lead to a meltdown.
  2. I can’t deal with unpredictability, and traveling to a new continent is full of them.
  3. I am a picky eater, and my precariously balanced diet depends on me being able to eat safe foods.
  4. I get overwhelmed by people. I’m pretty sure a transatlantic flight would be the end of me.
  5. Sensory Overload. Enough said.

Yet my brain tells me that I Can Do Anything, and my common sense can’t shut it up. My brain tells me to Follow My Dreams. Common sense suggests maybe finding a more realistic dream, but this is quickly shut down. I Can Do Anything, my brain proclaims.

I can’t do anything.

I can do some things, and that list is always growing. This is what I need to focus on because I logically know that I can’t just push through a meltdown with the power of Trying. What I can do, and what I need to do, is to get to know myself better. Find out where I can make little adjustments without compromising my mental health.

So on days when I try something new, I keep my schedule as close to normal as possible, even if I’m not at home. I talk myself through things that might be unpredictable, so I can be ready for them. I pack myself just-in-case food, and I know where the bathrooms are- just in case I need a break. And for the sensory worries? I never leave home without earplugs, stim toys, and distractions.

I wish my brain thought those little adjustments were a success, but I think we all know by now that it doesn’t. Because my dreams didn’t come true, it tells me, I must not have tried hard enough. Who cares about small victories? I’m not lying on a beach* in Barcelona, so I’ve failed.

Let’s all give a rousing Shut Up to my brain, because yeah, maybe I haven’t made it to Europe yet. Maybe I never will. But hey, let’s be realistic, I’ve got Nashville and Chicago, and Kansas City, all a hop, skip, and a jump away, so let the road trips begin!

*I would never do this anyway. Wet sand is sensory hell for me.

 

 

 

Can You Relate?

I run my hands over something soft

Something bumpy, something smooth

There’s no describing how good it feels

Can you relate to that?

 

I’m in a place that’s much too crowded

Too much noise, too much light

My senses hurt me, overwhelmed

Can you relate to that?

 

Engaging with my favorite things

Special Interests, special joy

Makes me want to jump and flap

Can you relate to that?

 

Talking to people I do not know

Try to smile, try to listen

Being polite is a social requirement

Can you relate to that?

 

Accepting that I’m a bit different

Always have been, always will

I’m starting to love who I am

Can you relate to that?