T. T. Testosterone

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About a year ago (almost exactly), I made a big announcement here, do y’all remember?

If not, here’s a brief recap: I very excitedly revealed that because of the gender dysphoria that I had been experiencing, I was making the big decision to have Gender Affirming Surgery, aka Top Surgery. I think I said something like “holy shit, no more tits”. That sounds like something I would do, right?

Well, here I am again, in a similar situation, one that is yet again affected by gender dysphoria.

I was confident as hell going into Top Surgery. I’d known since puberty that I wasn’t meant to have breasts, and was ready to go as soon as the decision was made (from the first consult to the surgery day took about 3 months. This will be important later.)

I was also confident that once my chest was flat that my dysphoria would decrease to a livable level. Because when you fell outside of the gender binary, you have to be realistic about the fact that things won’t be perfect, but they will be good enough that it won’t affect your life too much.

It’s baffling how wrong I can be about myself. Don’t get me wrong, I love my new chest, it’s everything I ever hoped for. And to give myself some credit, my dysphoria about that part of my body is basically gone. Unfortunately, and unpredictably, even more dysphoria has rushed in and filled the void. I was in no way expecting this.

I considered myself lucky because my insurance company doesn’t require hormone therapy before top surgery like a lot of them do. I knew that hormones were an option and that lots of nonbinary folks do opt to use them, but back then there seemed like so many downsides, so many things that I didn’t want to happen to my body that it outweighed the results that I was interested in.

Testosterone things I want: fat redistribution, more muscle, facial shape changes. Testosterone things I don’t want: facial hair (other body hair is fine, I’m already super hairy), bottom growth. Testosterone things I’m neutral about: voice deepening.

Looking over the pros and cons on that list, to me, it drifts slightly towards hormones not being worth it. But when I started to think about it, I started to realize that these were not the only factors. A strange phenomenon started happening to me a few months after my surgery, and since then has been the driving factor when it comes to making T an option, and it’s not about how I see myself anymore, but about how other people see me.

I was so surprised at the rage that I felt the first time someone called me ‘ma’am’ after my surgery. My brain was screaming at the universe “I went through the pain of surgery and recovery and still people think I’m a girl?!!” It just didn’t seem fair. I’ve been using they/them pronouns for a while now, and I certainly don’t mind when people call me he or him or sir. But at this point in my life, she/her/ma’am makes my blood boil. I’m also at the point in my schooling where I’m thinking about internships and jobs, and how much more confidence I’ll have if I feel comfortable in my body.

I mentioned earlier how it took a while to go from consult to surgery last year. So when I finally made the decision to see an endocrinologist in a gender clinic, I assumed that it would be the same initial consult, secondary consult, required therapy, doctors notes, wait wait wait. Again, I was wrong. The doctor’s appointment was awesome. They asked about preferred names and pronouns (and used them!) The doctor and I talked for 20 minutes, and as it wound down, I expected him to tell me how many hoops I’d have to jump through next. As it turns out, the answer was zero hoops.

Right now. He said I could start right now.

Color me surprised. And that color would be the color of panic because I hadn’t expected that at all. Turns out there are doctors out there who respect the fact that you’re a well-informed adult who can make their own decision. The autistic part of my brain froze up, of course. There was a lot of sputtering and stammering. My wife had to remind me that we’d been talking about for almost a year, and then she humored me and we made a pro/con list.

I bet you all know what the end decision way. If you don’t, I’d like to direct you to the 3 dozen needles, box of alcohol wipes, and the viscous vial of pure dude juice in my bathroom.

It’s been two weeks, I’ve had 3 doses. I don’t feel anything yet, and I’m not expecting to yet. I’ll give you the same warning I’m going to all my friends- I will be going through puberty. Again. So if I’m irritable and smelly and hangry all the time and pimple faced and my voice cracks, 1: you have the right to poke fun at me, and 2: I’m still me, no matter what.

 

5 things I learned from ACT therapy

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Once upon a time, there was a human named Meesh, who didn’t know that ignoring their mental health could end in disaster. They hid their worsening issues from everyone, including themselves.

The details aren’t important, but needless to say, they ended up in a place that was so unstable, they couldn’t fix it themselves, and ended up in something called Higher Level Care, which involved spending 10 hours a day in therapy.

But the therapy wasn’t as effective as everyone hoped, and they were stumped. It was only after Meesh was diagnosed with autism that a different type of therapy was tried. That therapy was called Acceptance and Commitment Therapy (ACT), and it made a difference like no therapy before had.

I’m sure you figured out that that story was about me (given that I used my name and all). ACT was the only therapy I’ve ever really connected with, but because I’m me, I like a lot of it and hate a bit of it.

But I like enough about it to share some of what I know with you, so here we go!

1. That I have values- Acceptance and Commitment Therapy teaches that everyone has values. Whether it’s family or education, humor or empathy, we all have things that important enough to keep fighting for. This seems a little bit obvious at first. Of course, I care about things, I’m not a robot. But at least for me, learning to lean on my values when I was having a hard time with something became comforting. It gave me a clear, on paper reason to keep going. Here is an example of a values list

2. That sucky stuff is going to happen and that’s ok- Many ABC Therapies, especially Cognitive Behavioral Therapy (CBT) drive me nuts. They are all about changing the way your brain thinks. I don’t know about you, but I’ve spent my whole life trying to do that, and it’s never worked. ACT teaches the opposite, in that you can’t always control what your brain does, but you can be prepared for it, so it’s less scary and overwhelming. I’ve always felt like this is a more realistic point of view.

3. How to make a good plan- Another tool that ACT gives you is the ability to make a plan for when things go bad. It figures, if you have a plan full of positive coping skills sitting in front of you, you’ll be less likely to use the negative coping skills. This had a surprising effect on the rest of my life as well. Executive Dysfunction shows its head for me in the inability to plan efficiently or make lists. Having someone who was trained to teach these things and go over it step by step with me (multiple times) made me significantly better at it.

4. That I hate visualization– “Imagine you are on a beach”, “Picture your thoughts floating down a river”, “Visualize your life in 5 years”. Instructions like this are my nemesis because I can’t actually make pictures in my brain. If I close my eyes and tell myself that I’m on a beach, I can imagine the smell of salt, I can imagine the sounds of the waves, but I can’t picture anything but a blank wall. It’s frustrating, especially when you’re being asked to do it multiple times a day. I’m telling you this because in any therapy there will be stuff that doesn’t work for you, and this doesn’t mean that the therapy isn’t a good fit. It’s perfectly valid to use the parts that work, and leave the ones that don’t work behind.

5. Grounding is stim-friendly- Grounding is awesome. It is using your senses to help keep you in the present, and to help you calm yourself. It is made for us autistic folks. To ground, I use weighted blankets, essential oil rollers, sour candies, sensory toys like putty and beads, and I play counting games with myself. Grounding works differently for everyone. I’ve met people who like to color, people who like to talk to friends, people who like to put smelly lotion on their hands. It doesn’t really matter what you do, as long as keeps anxiety or meltdowns or dissociative episodes from escalating. Grounding isn’t necessarily unique to ACT. CBT and especially DBT use it too. Here’s a list of grounding suggestions 

When I talk about stuff like this, I’m never trying to sell you on anything, I just figure if I which I’d known about something sooner, someone else might too.

As always, friend, I wish upon all of you good mental health and lots of self-care!

Dogs Don’t Generalize and Neither Do I

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generalize, verb

gen· er· al· ize

an extension of a concept (or behavior) from a familiar situation to a less familiar situation

Training with Winnie has been an amazing experience so far. As a cat person, I’ve never really trained any animal to do anything. Granted, the cats will sit for food, but I think that they mostly figured that out on their own. But man oh man are dogs a whole different story.

When we adopted Winnie, I did what any new puppy parent would do- I searched out books by the best animal behaviorists out there. My favorites ended up being Patricia Mcconnell and Sophia Yin. I learned a lot from both of them about not only how to train a dog, but why I’m doing what I’m doing. Dogs brains work really differently than human brains, although I was to discover that Winnie’s dog brain is very much like my autistic brain in one major way.

We don’t generalize.

Here’s an example- I’ve spent most of my life in New York, which has made me intimately familiar with the MTA transportation system. But when I was a smaller human, a teenage size human, the subway was a big problem. The train line that my friends and I usually took was the Green Line, which is composed of the 4, 5, and 6 trains. Something important to note- sometimes these trains overlap. A 4 train and a 6 train can both stop at the same station. In this example, that station will be the 14th St/Union Sq. station. We usually took the 6 train to get there, but it was running behind, and the 4 train would be a lot faster. This is where the trouble begins.

Any New Yorker worth their salt will tell you that in this situation, the 4 train and the 6 train are exactly the same. Even my teenage friends would tell you that. They certainly told me. Multiple times. And time and time again, I’d tell them that they were crazy, then they’d say I was bad at directions, and eventually, we’d miss the 4 train and end up taking the 6 train anyway, and I’d spend the whole train ride trying to figure out they thought that taking the 4 train was the same thing as taking the 6 train.

I’m sure I don’t have to prove to you guys about how these things are different, but just in case, I made a list:

Things that are unknown about the 4 train:

  • If they have the old seats or the new seats
  • How many stops are between where I am and where I want to be
  • If they have the new digital maps
  • If the next stop announcement will be easy to hear
  • How to get out of the subway at the other side

Your average human being doesn’t think about these things. Their brains are able to generalize a familiar situation into an unfamiliar situation.

Now, dogs don’t ride subways, they do have the same issues generalizing that I do.

The way that people help dogs learn how to generalize is to provide them with variety and repetition. When we taught Winnie to sit, we didn’t just have her do it in our living room. We did it in the kitchen and in the bathroom, on our front porch and in the car. In Petsmart, Petco, Pet Supplies Plus, and every place we could find that had ‘pet’ in the name. She learned that ‘sit’ can happen anywhere, and now she’s prepared to do it.

When Winnie came home, I expected cuddles and belly rubs and a lot of picking up poop. I definitely wasn’t mentally prepared for the fact that she and I would share similar learning struggles. I like to think that it makes me more conscious of my own brain processes, and maybe even makes me a better trainer. Now, if only Winnie would give me as many people treats as I give her dog treats!

 

Waiting Waiting Waiting

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*this is a vent in the purest sense of the word. I’m hoping that talking through how I’m feeling might grant me some insight*

Frustrated. Angry. Confused. Scared. Upset.

These are all “feelings” words that describe me today. Okay, not just today. Maybe its more like a few weeks. Or a decade. Or my whole life.

I’ve spent the last decade or so living with a chronic illness, and I like to think that by this point I’m pretty good at dealing with all things health-related. I’ve now realized that this is a lie. I’ve been lying to myself without knowing it.

There are, in my opinion, two major parts to being ill- the Physical and the Mental.

When it comes to POTS, I’ve got both of them down. I’m used to my heart rate jumping high, I’m used to being dizzy, and I’m used to my body being unpredictable (POTS affects your Autonomic Nervous System, which controls everything from how well your body digests food, to how efficiently it pumps blood through your body). And when it comes to the mental part, I can handle feeling useless, feeling frustrated that my doctor isn’t calling me back or that test results are taking forever. I’m even used to not getting to do things that I want (mostly things that involve a lot of standing).

The POTS stuff, as I’m sure you’ve realized is just background for what’s happening with me now.

About 6 months ago, I started to experience dyspnea, which is med-speak for ‘I can’t breathe when I lay down”. Thanks to POTS, I didn’t panic. I’m used to weird stuff happening to my body, remember? I figured that whatever it was transient and would disappear as soon as it began. This, my friends, was tragically optimistic of me.

I’m going to gloss over the first pulmonologist that I saw, the one who told me that I had Respiratory Muscle Weakness, a pretty severe case, and then refused to call me back. For a month! It sure feels like a kick to the gut when the person who’s supposed to be taking care of your health thinks that you’re too complicated and pawns you off on someone else.

*deep breath*

The doctor situation is better now. I’ve got smart specialists who communicate well. I’m so thankful for this, but I’m still frustrated and angry and confused and scared and upset. If I felt this awful when I was getting my POTS diagnosis, then I clearly must have blocked it out because it is damn near unbearable.

It’s the waiting that really gets to me. I’ve spent this past few weeks on the edge of my seat, waiting for test results to come in, and for doctors to call me back. And every time a test does come back negative, half of me is overjoyed that I don’t have Myasthenia Gravis or something like that, but the over half of my brain whispers to me that at least it would have been an answer.

So that’s all of my insight, every last piece. And what have I learned? I know that I don’t handle the unknown very well (this should not be a surprise to any of us though). I know that doctors who treat me like I’m a nuisance make me a tiny bit homicidal. Lastly (and this is the big one, I think) I realized that for the first time in the entirety of my adulthood, I’m really happy with my life, and the idea of some medical condition fucking it up is what’s making me frustrated and angry and confused and scared and upset.

So I’m going to keep my self grounded. Maybe do some self-care. I will not obsess about something I can’t change. And most importantly I’m going to keep my fingers crossed for an answer that’s straightforward and easy to treat. Something the exact opposite of POTS.

And until then, I’m going to BREATH

 

Becoming: Autism Style

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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

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I have been in college for 5 weeks now, and as usual, it has 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 partially in person, partially 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 brainpower 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

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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 too 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

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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 suppress 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 communicating 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 an incredibly useful 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’s 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

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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 update 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 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 conceived 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 extraordinaire, protector of my head.

 

 

 

7 Things People Don’t Know About Service Dogs

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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 is 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 waitlists. A two-year waitlist 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 a 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 taken 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 to 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 the 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!