Becoming: Autism Style

I am a reader. At three years old I surprised my parents by reading full sentences out of nowhere, and the rest was history. These days, ebooks from the library fuel my need to read. The only downside to library books is that new or popular books can take months to come in.

I waited fifteen weeks for Michelle Obama’s book, Becoming. It took me a while to get through (thank you midterms), but I was really happy about a couple of things. One, although she spells it differently than me, her nickname is Meesh/Miche too. Guys, I’ve got a FLOTUS nickname! Secondly, there’s always the worry when you learn a lot about someone that it will ruin them for you, but I can confidently state that I still want to be Michelle Obama when I grow up.

Towards the end of the book, she was talking about Barack, and she said: “being president doesn’t change who you are, it reveals who you are.”

I immediately recognized that this doesn’t only apply to presidents. My brain went straight to “diagnosis doesn’t change who you are, it reveals who you are.” And that makes sense, right? I know that when I was diagnosed with Autism, it didn’t turn me into an entirely different Meesh. It didn’t even alter the Meesh that I was. It just showed parts of who I was in a new light.

And I think that this was a fantastic thing. Because I could have looked at some of my personality traits that I now knew to be autistic, and suppressed them. I could have taken that attitude of ‘well, I might not have a choice in having autism, but I have a choice what people see of me.’ I could have. I think it might have killed me.

Instead, I celebrated. I am how I am for a reason. And I am not alone, there are others like me. I put my money behind the fact that the people who cared about me would keep caring about me. I never expected that strangers on the internet might accept me and care about me too.

This is not to say that I don’t get upset or frustrated. Hell, I get frustrated every day. Some days the world seems impossibly unfair, and it seems like everyone else can do things more easily than me. It seems like I’ll never achieve my goals. Some days I’m not sure what my truth is, and that hurts.

In one of the last chapters of Becoming, Michelle writes

“So many of us go through life with our stories hidden, feeling ashamed or afraid when our whole truth doesn’t live up to some established ideal. We grow up with messages that tell us that there’s only one way to be American—that if our skin is dark or our hips are wide, if we don’t experience love in a particular way, if we speak another language or come from another country, then we don’t belong. That is, until someone dares to start telling that story differently.”

I don’t particularly care how American I am, but what struck me here was that even if I feel like people can’t see the real me, or that I’m not living up to expectations (usually ones that I’ve set for myself), it’s ok, because there’s one thing that I know I want.

I want to tell the story differently. I want to show people that there are many ways to be autistic, and that none of them are tragic. Autism doesn’t mean life is over, it means life is different. And no matter what anyone says, we all still belong.

6 Ways I’m Getting Through The Semester

I have been in college for 5 weeks now, and as usual, it has it been a serious adjustment. My longest previous experience of being 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 was 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 ado, here’s what’s worked for me so far.

  1. Visual Directions

This one requires a buddy, but if you can visit your campus before the semester starts and have someone with an excellent sense of direction to help you make visual directions, it can significantly cut down on the amount of time you spend lost.

2. Hybrid Classes

I’m not sure hybrid is the word that all schools use, but a hybrid class is part in person, part online, and all autism-friendly. Spending 1 day a week in class instead of 3 has left me with less stressful social issues, and less sensory overload. Even just one hybrid class has made my traditional on-campus classes more doable. Now, online classes aren’t for everyone- it usually requires you to be more independent, but I love the flexibility, and to be honest, the fact that I can communicate on emails and message boards instead of face to face. Also, as a bit of a hangover from all that homeschooling, I prefer to teach myself things. If this is sounding good to you, I highly suggest seeing if your college or university offers hybrid courses as an option.

3. Color Coding

There are several ways that people learn, some people learn visually, some are better with Auditory, and others are kinesthetic learners-they learn using their bodies. Now me? I’m a hands-on learner for sure, but most of the time it’s not very convenient for me to touch everything I’m trying to learn. Luckily I’ve got visual learning as a back-up. Even though I can’t make pictures in my head like most people, visual information is fairly accessible to me. Hence, color coding. Each class of mine has a color, and I use colored pens and markers on my planner, my calendar, my to-do lists- all that organizational stuff. For me, it makes tasks and appointments pop out, so I’m more likely to process and complete them.

 

4. Built-in Self Care

I’m pretty sure that one of these days, I’m going to bring up self care, and you’ll all revolt, and leave me here talking to myself. But until that day, we can talk about self care! I find it extra important during the semester, because all of my brain power is going towards learning and being social and trying to be flexible, so I’ve got no brain power to take care of myself. And I’m not talking overly complicated. You don’t have to book a spa day or get a massage. I go to my favorite used bookstore and browse for a while and buy a book (or two). On my long days, I treat myself to coffee. I bake cookies with Jess. I take time to snuggle with the cats. I think the best self-care is little, focused things. You know what you like best, so let yourself have it sometimes.

5. Quizlet

Hands up if you were that kid in school who always had a stack of note cards to study with. My hand isn’t up, because although I admired to organizational abilities of people who could study, I could never figure out how to make it work for me. Enter technology. I found the Quizlet app when I was looking for a way to put digital post-it’s on my phone. I still haven’t figured that out. Hm. Anyway, it’s a free app, where you can make your own decks, but you can also use other peoples. I can guarantee you that most low-level courses already have decks of information made. This, and the fact that Quizlet offers not only quizzes but games to help you learn information, made me a studying convert. Having all my decks on my phone means them when I can run through while I’m waiting in line, or in the car. Convenience, people, I’m all about convenience.

6. Habitica

The apps that I find most successful are the ones that give you a streak if you use it every day, and if you miss, you lose your streak. I’m talking about apps like Duolingo, or Memrise, or in this case, Habitica. Habitica used to be called Habit RPG, which I think gives you a better idea of what the point of it it is, but whatever. The concept is pretty simple, you put in things you’d like to make a habit, like brushing your teeth twice a day, or playing with the dog, or remembering to pack your lunch. If you do these things, you get points. You can level up, buy cool gear for your character, and hatch pet eggs. If you don’t, you break the streak and get noting. I find it a nice push to do things that are important, but not that important. (And if you’re worried that keeping your streak is TOO stressful, there’s a tavern where your character can rest without consequence.)

So here we are, everything that’s keeping me going this semester. I’m sure I’ll figure out new stuff, so look out for a part 2 of this post in Fall 2019!

Graphic

One of the very cool things about being in school with a bunch of folks who were born a decade before me is that it means that I get a chance to stay caught up with things.

I get book suggestions, and learn about apps that I need to try, and find out that there’s a website for something that I’ve spent many frustrating hours trying to figure out on my own.

Today, for example, a website called Canva was brought up, because my group project needs a logo. “It basically does the graphic design for you” was the gist that I got. And of course I had to check it out, mostly because that’s who I am as a person.

Anyway, I’ll have to admit, this thing is pretty cool. It offers you the ability to tweak pre-made templates, or offers up the tools to build something from scratch. And by something I mean logos, posters, resumes, and even my big interest right now, infographics.

I can admit, I’m a sucker for a good infographic, and I’ve always wanted to make my own. I learn great through visual means, and I like offering it up as a learning tool.

So I spent the day futzing around with the program. I’m still learning, but it a pretty pain free experience, plus, it’s a really fun challenge to communicate this way.

So, I present to you, my very first, not to shabby but definitely needs more work, infographic!

Et voila! It is kind of simplistic? Sure. But I put it together from scratch, because I can’t start the easy way, can I?

I promise I won’t spam you guys until you’re all infographiced out. Who even knows what my next post will be about? Will it be about the upcoming career fair? Will it be about how my body is on the fritz once again? Even I don’t know!

 

5 Signs You May Be Experiencing Burnout

When I was 19, I was trying my best to be a grown up. I was living with Jess in a new city with no friends or family around. She was in medical school, and I was working full time and going to school part time.

I thought that this was what adults do, and so I missed a lot of warning signs that something was starting to go very wrong.

It was burnout.

Autistic burnout is usually caused by an autistic person attempting to surpress their autistic traits over a period of time. It causes regression, and sometimes, some of the regressions are permanent. For example, I’ve never regained the sensory tolerance I had before.

Looking back now, I can easily identify the red flags. I hope knowing what early burnout looks like will keep it from ever happening again.

These are my symptoms. Yours may be different. But I hope that you read this and think about what your symptoms might be, so you can prevent burnout too.

1. Everything is TOO MUCH- Everything is too much all the time, you might say to me. And I get that, I really do, but this TOO MUCH will be different. It’s the difference between a gust of wind and a tornado, so I promise that you’ll know the difference. The main thing to watch for is that the overload will keep increasing and it will feel neverending. If one day you realize that you’re hiding in your closet because the world seems like too much, it might be time for an intervention.

2. You’re tired all the time- And not just sleepy. I mean falling asleep sitting up tired. Can’t get out of bed in the morning tired. Things that are usually easy hurt to even think about. And there’s a reason for this exhaustion, the parts of your brain that handle sensory issues and social skills are working overtime- and you’re paying the price. Self care, taking time for yourself, giving your body what it needs, and asking for help if you need it are the best way to deal with this.

3. Communication is a struggle- Let’s face it, most of us are not great communicators at the best of times, I think that we can admit to that. But we know our strengths and weaknesses, right? I know that I communicate most effectively in writing, and that if I get too stressed, I lose all of my verbal communication skills. That’s just my normal. It’s when things start happening outside of the norm that I know there’s a problem. If I’m having a lot of trouble comminicating with my wife (who is my person), I need to consider that something might be up. I think that you probably know where your point is, when your gut tells you that something’s up. If you don’t, that’s fine, beginning to notice what’s normal for you and what isn’t is an easy, but incredibly usefull skill to have.

4. Can’t stop stimming- Do you unconsciously stim sometimes? I definitely do, and it has been reported back to me that I have ‘good’ stims (that I do when I’m happy! or excited!) and ‘bad’ stims (that I do when I’m stressed or tired). For example, if I’m rocking side to side, I’m in a super chill mood, but if I’m rocking front to back, people should be concerned. And that’s what I’m talking about. When stimming turns into a frantic or upsetting activity, whether there’s self harm or you just can’t stop, that’s when this sign becomes a big deal. As with all of the other signs so far, you know what your norm is, and it’s the deviation from that that needs to be questioned.

5. Your special interests seem extra special- 5 books a week. 2 hats, 2 mittens and a scarf. Top scores on everything. Special interests are one of the defining behavior of us autistic folks, but there special, and there’s Special. Sometimes all I want to talk about is Star Wars, or Phineas and Ferb, or Stephen Sondheim. I can, for the most part, be persuaded to talk about other things, if in a slightly less enthusiastic manner. But during that burnout? I literally couldn’t think about anything except my special interests (which at the time were Super Mario Brothers and Guinea Pigs). This might be the hardest one to notice in yourself. At least for me, I didn’t feel like I was thinking or acting any differently, but in hindsight I definitely was. In this sort of situation, having a buddy is definitely helpful.

A Note– If you know anything about mental health, you might have noticed that a lot of these symptoms could also be caused by anxiety or depression. For me, autism and mental health go hand in hand, to the point of them influencing each other, and it might be the same for you. All I’m trying to say is if you’ve read this whole post (thanks for that!) and you see yourself in some of these signs, checking in with a professional you trust is totally reasonable.

Take care of yourselves, friends!

 

 

 

 

Ode to a Hat

So I was digging through my drafts, like you do, and I found this poem, with some notes, and the first few lines written. I remember being excited to write it, so I figured I’d dust it off and finish.

I’ve had my grey beanie for more than 5 years, and it is the ultimate comfort item. Things have changed, though, so look for an uptdate at the bottom.

Ode to a Hat

I have a hat, it’s grey and old

It fits real nice, or so I’m told

It matches everything, I find

This might be ’cause I’m color-blind

I don’t leave home without it, cause

It drowns out out all the noise and buzz

Its weight helps keep me safe and calm

It soothes my senses like a balm

And when the world feels red and raw

And my whole head feels full of straw

I pull it on and give a sigh

I feel so good, and I know why

So. Since I concieved this poem, some things have changed regarding my hat. Don’t worry, I didn’t lose it, but when I got my hearing aids, I was informed that you can’t wear a hat and hearing aids at the same time, because the hat will muffle the mic, and give a lot of feedback. It’s been a hard adjustment.

Almost two months in and I’m still trying to get used to my head feeling naked. I still pull it out if I’m at home and really stressed, but it’s so hard to take it back off sometimes, it’s almost worse.

So RIP to my favorite grey hat, my comfort item extrordinaire, protector of my head.

 

 

 

7 Things People Don’t Know About Service Dogs

The general public sees a dog in a vest and the thought never crosses their mind about why the dog is wearing it. Up until recently, most people assumed that every vested dog was a guide dog, and that was that. It’s better now. A little better, anyway. People are a lot more educated about service animals, but the majority still can’t tell you the difference between a service dog, an emotional support animal (ESA), and a therapy dog.

These are misconceptions I’ve noticed while researching, or when talking to people about Winnie.

1. Service Dogs and ESAs Are Two Separate Things-

Emotional Support Animals have been in the media a lot lately, and as usual, it’s been making everything more confusing than less. Let me clear it up right now, there are no such thing as Service Peacocks. This is because Service Animals and Emotional Support Animals (ESA’s) are totally different things. Emotional support animals are for just that- emotional support. They help ease their owners’ anxieties and phobias, but they are not a psychiatric service animal. EAS’s are not covered by the Americans With Disabilities Act (the ADA), instead they are covered by the FAA, if their owners are trying to bring them on planes, and the Fair Housing Act (FHA), if their owner needs to live in a place where pets are not allowed. Planes and Housing are the only places where ESA’s have rights, and to get these rights, the owner needs a letter from a doctor, and sometimes extra paperwork. *note* individual airlines are starting to crack down on ESA’s in planes, which should spark some interesting discussions.

2. Getting a Dog Doesn’t Work the Way You Might Think-

The media would have you believe that there’s only one way to get a service animal. You realize you need help, you get in touch with a charity that trains cute little puppies into perfect service dogs that are delivered right to your door for free. You bond with the dog immediately, and all of your problems are solved. This is so not how the process works. For one, service dogs are almost never free. The average cost of a dog is $20,000. And if you do find a charity that gives away dogs, their scope is very narrow. Combat Veterans. Blind People. Autistic Children (but never adults). And regardless, there are wait lists. A two year wait list to even be assigned a dog, plus two years of training, you might not see your service dog for years. Because of all these factors, people sometimes decide to train their own dogs.

3. Some People Train Their Own Dogs Instead of Going Through a Service-

The law says that people have the right to train their service animals. This is a huge decision. Training a service dog is a lot of work, and as someone with a disability, it’s even harder. Self-trained service dogs also wash out (which means fails as a service dog) at much much higher rate. Self-training also doesn’t save money, which is an upsetting surprise for a lot of handlers. Dogs cost money. Food and toys and vet bills and training materials and specialized trainers and service vests. Self-training means you don’t need $20,000 right at the beginning, but over the course of the training, you’ll still be spending at least $20,000. Self-training is a decision that shouldn’t be taking lightly. I am self-training Winnie mostly because no programs who work with autistic people work with adults. I also have had dogs before, and I have Jess at home to help. I do think, after 3 months of puppy-hood, that if I get another dog when Winnie retires, I’ll be seriously considering a service.

4. Service Dogs Aren’t Required to Wear Vests-

You will always be able to recognize a service dog by its vest, right? Wrong! There is nothing in the law that requires a service dog to be identifiable in any way (this is because the Americans With Disabilities Act is really big on privacy). So why do most owners put their dog in a vest? The honest answer is that it’s easier, and by easier, I mean that if you’re in a public place with a dog who isn’t wearing a vest, people will harass you. In fact, even if they are wearing a vest, and someone decides that you don’t look “disabled enough”, they might harass you. I think we’ve all experienced “disabled enough” before here.

5. There is No State or Federal Registry For Service Dog-

You might have seen a service dog walking around with an ID or certification papers, and listen to me now when I tell you that it’s all crap. The only requirements that make a service dog a service dog is that its handler has a disability that requires an assistance dog, and that the dog is trained to do tasks for the handler. The dog may be asked to leave a public space if it’s not well behaved, but that’s slightly different. So, to get down to it, service dogs cannot be certified, and asking handlers to provide paperwork or asking invasive questions isn’t legal. Any company that says that they can provide papers, or certification, or identification are just looking for money.

6. Service Dogs Aren’t Just Well Behaved, They’re Trained for Specific Tasks-

Service dogs look like the most obedient dogs in the world, and while this is true, obedience is the least of what they are trained for. The things that make service dogs more than just well-behaved pooches is the idea of tasks. Service animals are trained do specific things. A guide dog has very different skills than a diabetic alert dog, and these skills are called tasks. Tasks break behaviors into little bits, like a guide dog can be trained to lead their handler to a specific place. Tasks are required, period. Generally, 3 is minimum. Using Winnie as an example, she’ll be trained to do Deep Pressure Therapy, to sense when I’m getting overstimulated and lead me to a quiet area, and to interrupt my harmful body stims. This is just for me. Another autistic person might have their dog do an entirely other set of tasks. Everyone is an individual, and that’s one of the things that makes training a service dog so complicated.

7. Service Dogs Can be Any Breed, From Chihuahua to Great Dane

Picture a service dog for me. There’s a golden retriever in your mind’s eye, isn’t there? That, or a doodle of some sort. And there’s a reason for that. Labs, retrievers, and poodles are all very well suited to being services dogs, because of their temperaments and learning styles. This does not mean though that other breeds aren’t up to the job (although some breeds are more suited than others). Any breed as long as they’re smart, trainable for the handler’s needs, and polite and non-reactive can be service dogs. So, while German Shepherds make good guide dogs, smaller more portable dogs like chihuahua and Shih-tzus might make fantastic seizure alert dogs. An informal note about this though, using a non-standard breed can and will make people pay more attention to you. It’s just a thing.

So, there was a lot of information! Do you feel smarter, or just tired? Anyway, if you’ve got questions, or you think I forgot something important, or if you think I’m just plain wrong about something, drop me a line, and let me know!

Winnie: Tricks and Treats

This one’s going to be super media heavy, guys, just a heads up.

So, I’ve been talking a lot in this series about Winnie and about Service Dogs, and I figured now’s the right time to show instead of tell.

Winnie is currently solidifying her obedience skills, and sometimes that can feel kind of frustrating because it can seem like she’s not learning anything “useful” yet. I fall into that trap sometimes. I think everyone does. But it really helps me to be able to see how the skills she’s learning now will turn into tasks later.

Oftentimes tasks are made of multiple steps, each which need to be trained individually before they can be put together. So, while the skills Winnie is going to show you may seem simple, keep in mind that the whole is greater than the sum of the parts.

Here’s a highlight of Winnie’s basic commands:

Sit-

 

Sit is the classic command. It’s the first thing that most puppies learn how to do, and Winnie is no exception. She figured out that sometimes when she sat, magic food would fall from the sky, so she’d wander around, sitting randomly, hoping the food would come. It was adorable. Sit is a lot different for Winnie these days, it is used as a polite way to say ‘please’. She has to sit to get food, or treats, or pets, and because of it, she’s learning that she has to be calm, even if she’s excited about something. She can’t do it calmly yet, especially when what she wants as to see people of dogs, but she does manage to stay sitting while her tail whips back and forth and her butt vibrates.

Down-

 

Down is Winnie’s default move. It’s very difficult sometimes to keep her from going right into a ‘down’ from other commands. Which can be hard, when we don’t actually want her to be down, but it’s also good, because when I’m at school and at work, down is going to be in the position that she’s in. So down is the first step. Right now, she’s not in the formal position that will be required from her later, but it’s a great stepping stone to build on.

Stay-

 

Stays are my personal hell. They’re probably Winnie’s hell as well, but since she can’t talk, I’ll never know. What I tell myself and what I’ll tell you is that she’s still a baby. She is five months old, and her self-control abilities are almost nil. They’re actually better than most puppies her age. Stay is definitely up there in the top 5 of skills that will be important when she’s working. I need to be able to stick her somewhere and trust that I can move around without her getting excited and bounding off. The combination of down and stay, (often called a down-stay command in training world) will help her handle public access as she gets older.

Touch/Target-

 

Touch is one of the most important and most used commands when it comes to training service dogs. It’s a simple concept, you ask the dog to target, and they touch your hand, or a pole, or a ball on a stick, etc. Simple right? Say you want to walk nicely next to you, you can just walk with them targeting. If you want her to touch a part of your body, you just target your knee. This likely be a part of most of the commands that Winnie will learn.

Leave It-

 

The first time your 9-week-old puppy tries to make off with a poop bag, you realize very quickly that she doesn’t understand what “NO NO NO STOP DAMNIT” means. And you realize that “NO NO NO STOP DAMNIT” makes a terrible command, because you’d look like a lunatic saying it in public. This is where Leave It comes in. Leave it means, essentially ‘ignore that’. When Winnie was very little, we used it to (try) and stop her from eating garbage on her walks. But as we’ve all matured, Leave It has change in a wonderful way. Winnie is a social butterfly to a fault, and all she wants in life is to say hi to every human and dog she can see. So, we use Leave It when we can’t stop and visit. And (mostly), she moves on. As we move toward more public access skills, Leave It helps her learn what is and isn’t ok for her to sniff or touch. This skill will likely never become part of a task, but it goes towards her general temperament and manners skills, which are just as important.

Look-

 

I don’t think anyone can know how many ways ‘Look’ can be used until they try to train a dog. I honestly thought that it was kind of silly when the trainers at puppy kindergarten introduced the concept. Why did it matter if the puppy looked at you all the time? Now, Jess did point out that my issue may have been an autism thing, and that just because I didn’t care about eye contact or looking at peoples’ faces, it doesn’t mean that Winnie didn’t either. So, I have half-assed it for a while; look, guys, I’m only human. But as Winnie started doing more complex things, I started to see the value. When she looks at me, she’s checking in with me. She’s asking ‘” is this okay?”, “am I doing it right?”. We’re communicating in a way that makes sense to her. I still find it uncomfortable sometimes. It turns out dog eye contact feels just as weird as the human version. I knew there would be extra training challenges because I’m autistic, but I think we’re getting through this one ok.

This is just a handful of the things that Winnie can do so far, and she’s learning more every day!  Do you have a favorite trick or command that your pet knows?

 

The Winnie Project

I think most of us have every intention of posting regularly, and if you’re anything like me, posting on a schedule (oh Monday and Wednesday posts how I miss you!) However, we also all know that life always finds a way to intervene. Life in this case for me is school and the puppy. But this semester you and me and this blog are in luck! I’m taking an English course that calls for blog project. I was given the option to make a new blog or the use this one, and I thought I’d use the project do a series of posts involving media, which is something that I don’t do often.

Media, you say? What on earth could you use media for that has anything to do with autism. Or mental health. Or disability? Or anything? That brings us to my previously mentioned other life distraction: Winnie the Service dog.

It’s been 3 months since I talked about her, which seems crazy, given how she smushed herself into every corner of my life. And I’m going to be honest, this isn’t always a good thing.

I’m a cat person. I’ve always liked dogs, and while that’s still true, I think I can say with confidence that I. Don’t. Like. Puppies. Are they cute? Yes! Are they fluffy? Usually! Are they often biting little jerks? YES.

Luckily, the internet came through for me. There is a subreddit (r/puppy101, for anyone who’s interested), that introduced Jess and I to the concept of Puppy Blues, which is essentially post-puppy depression that leads you to hide from your puppy in the kitchen, crying about poop. Most new puppy parents get puppy blues, and they do eventually fade. Now, for us, eventually meant weeks and weeks, but we’re at the point where I finally like the puppy. Most of the time, anyway.

I credit training to be a huge part of the improvement in her…pleasantness.

Training has also exposed her to a lot of really important things, like having to focus around other dogs, about having to be quiet even when she doesn’t want to, and how to listen, no matter where she is or what she’s doing. She also learned enough to get her first American Kennel Club (yes, the dog show people) training certification. Guys, as of last week, Winnie is a S.T.A.R. Puppy!

And that’s not all! Breaking news reports that after an intense evaluation by a trainer, our own little Winnie-poo (and by extension, me, of course) was accepted into a local program that helps owners who are self-training service dogs. They do all sorts of training events, and gives us access to trainers who have tons of experience with service tasks, let us network with other owners and their service dogs, lets us go places where we wouldn’t have access to otherwise.

So that’s where we are right now. Thanks to this blog project, you’re going to get to hear from me a lot more, and therefore more about Winnie! Coming up will be a List Day about what people might not know about service dogs, and after that a post full of pics and videos showing what Winnie’s learned so far, and how she’ll build on it in the future!

Lastly, I know I always open it up to you guys if you have any questions, or want to share your experiences, but I’d also like to ask if you’ve got any experience about being a blogger or a writer (or both!) that you’d like to share to do so!

P.S. For the duration of the Winnie Series I will be including a puppy tax- the most adorable of photos of Winnie, in hopes that the cuteness will make reading about her so much worth it.

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!