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 the 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 an appointment with an Audiologist in October). In order to get software that would help me 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?

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 or 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 hope that the lion thinks 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 me put it all out there. It is not my job to represent every person in my community. It is not my responsibility to be witty and eloquent so strangers will pay attention to what I have to say. 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 more 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 enjoyed participating so much in the first place)

And lastly, I won’t get down on myself when things aren’t perfect.


Sorry, I Can’t Hear You

update from June 2019. In December of 2018, I was diagnosed with Central Auditory Processing Disorder(CAPD). And it was not a subclinical case, in fact, I scored in the .1 percentile of several categories. This means that I, in fact, have a severe case of CAPD.

On top of that, to my surprise, the auditory diagnostic tests showed that I had mild/moderate hearing loss in both ears. Turns out my eardrums are absolutely covered in calcification.

So what’s changed for me since I wrote this post? Well, I wear hearing aids now. I also us an FM system for things like lectures and movies. Most importantly I’ve realized how much I achieved while I was an undiagnosed hard of hearing person. If I did so much then, imagine how much I can do when I can hear!

Plus, I’m learning ASL!

Have you ever seen the Charlie Brown cartoons? Whenever the kids are in school and the teacher talks, everything she says shows up as “Wah Wah Wah”. It sort of sounds like a warthog playing a trombone. They do this to signify that the kids aren’t really listening to what’s going on, but what they didn’t realize was that they’ve almost perfectly depicted my experience with Auditory Processing. Auditory Processing Disorder is what we call an autistic cousin, which is what the Autism Community defines as a disorder that shares a lot of symptoms with autism or is commonly diagnosed alongside autism. Other autistic cousins include Sensory Processing Disorder, Tourette’s Syndrome, OCD, and ADHD. Even people without the disorder can still have subclinical levels of Auditory Processing issues, and that’s me. I don’t have trouble hearing, but I do have a lot of trouble interpreting what my ears are taking in. As I’m sure you can guess, this peppers my life with many interesting challenges.

For example, phone calls are the bane of my existence. I’m not at all ashamed to say that whenever possible, I let my wife make phone calls for me, not to mention answering my phone and listening to my voicemails. The phone presents two challenges. One, I have to interpret what the other person is saying. This is extra difficult because I can’t read their lips.

If we were to scale how well I understand what a person is saying from 1-10, it would look like this: 5 points would come from auditory processing, meaning that I reliably understand about 50% of what some is saying to me. Another two points comes from lip reading. Matching the shapes people’s lips are making with the sounds coming out of their mouth really helps my comprehension. The last 3 points are context. Guessing what someone’s going to say isn’t as difficult as you’d think, and it’s easier with someone that you know well.

The context is the most variable part of the equation and can mean the difference between total understanding and spending the whole conversation hoping that I’m smiling and nodding in the right spots. I’ve learned over the years that the better I know someone, the more time I’ve spent having conversations with them, the easier the concept is to interpret. For example, my wife is one of the few people I can talk to on the phone, for two reasons, one, as you might guess, is context. I can usually predict what she’s going to say because I know her so well, the second reason, is cadence. Cadence is a pretty way of saying inflection, and it’s something that given enough time, I can memorize. There are a handful of people in my life that I have done this with, and it makes for a much better conversation. If I’m spending the whole conversation struggling to keep up, I’m not able to participate in a satisfying way. Whereas, if I know what’s going on, I can be present and really enjoy the other person’s company.

This massive difference between talking to someone you know, and talking to someone you don’t, is an incredibly important, yet little known phenomenon. At least that’s what my therapist says. I didn’t really see how it could be that important until she shared an experience she’d had while working with neurodiverse kids.

Say child with Auditory Processing issues has been moved into a new classroom. In their old classroom, they were happy and engaged, able to listen to the lesson and follow instructions. After they move to their new class, they seem like an entirely different child. They won’t respond to questions or follow instructions. They seem agitated and uninterested, and their parents are baffled because the child is acting totally normal at home. So what is the teacher to think? Maybe the child is having trouble with change or struggling to adjust to their new environment. Maybe they’ve regressed. Maybe they’re just misbehaving. But it’s none of those. The child spent a whole year learning how their old teacher spoke, and because they were used to it, they were able to listen, and pay attention, and participate. But with a new class, new teacher, kids, this kid is only getting maybe 60% of what’s going on; of course they can’t participate or follow directions!

The idea of being to hear, but still not actually hearing can be a struggle for a lot of people to understand, and while that makes sense, I think it’s something we should be actively sharing knowledge about. Living in a world that sounds like static twenty percent of the time can really affect a person’s experience. Especially for autistic people, like me, who can have both hyper and hypo sensitive hearing, being able to better interpret the world helps us live a better life. There are some early interventions and proven therapies, so there are solutions out there, especially for kids. As someone who was diagnosed in their late twenties, I’ve figured out my own solutions for things, and not to brag, but I think I’ve done a pretty good job, considering, and I’m sure other adults with auditory processing and/or autism having come up with some good stuff too. Our techniques may not appear in any textbooks, but we’ve found a way to get the most out of our lives, even if the telephones baffle us.