High-Functioning is Not a Compliment – a Poetic Rant

You call me high-functioning because I can speak in words, and you say I’m articulate

But that doesn’t account for the times when the words get trapped inside of me, and speaking seems as hard as running a marathon.

You call her low-functioning because her voice is hard to understand

But she has just as much to say as I do; you just have to listen.

You call her low-functioning because you see her rock her body and flap her hands

But you don’t think about the joy this brings her, how satisfying it is to move to the beat of her mind.

You call me high-functioning because you don’t see me playing with my hands under the table

But you don’t know how much I want to rock and flap just like she does, how it makes me feel finally comfortable in my own skin.

You call me high-functioning be cause I can socialize

But you don’t see my constant internal prompting of what to say, the years it took me to get to this point, or the internal agony when I think I’ve made a mistake.

You call her low-functioning because she often repeats the same phrases over and over again

But you don’t see the meaning in these phrases, or the way she uses them to communicate.

You call me high-functioning because I can go to social events

But you don’t see the exhaustion that comes afterward, and the toll that takes over time.

You call her low-functioning because she melts down, yelling and banging her head on the ground

But you don’t see how hard she has been trying all day long to hold together.

You call me high-functioning because you don’t see me cry and scream

But that’s because I’ve internalized, and my meltdowns happen when the world becomes too fast and swirling and nothing makes sense any more.

You call her low-functioning because she loves to talk about one TV show, and hardly ever talks about anything else

But you don’t see how much joy this brings her, and how it has allowed her to connect and make friends.

You call me high-functioning because I can talk about things I’m not interested in

But you don’t see the pure joy of infodumping about my interests, and how painful it is to keep that all inside

You call her low-functioning because you knew right away that she was not the same

You call me high-function because you never would have known anything was different about me if I hadn’t told you

But maybe I’m tired of the sameness.

High-functioning is not a compliment

When all you’re doing

Is comparing me to her.

(Originally published on my tumblr blog.)

Seeing in Color – On My Coming of Age

This piece was inspired by Luis Lowry’s novel The Giver. I interpret the metaphor of color to represent coming-of-age, though there are many other great ways to interpret this.

Everything starts in black and white.

Emotions are either happy or sad.

Everything is either right or wrong.

People are either good or bad.

I can’t say when my first glimpse of color was. I couldn’t tell until I looked back that my black and white childhood worldview, which I had considered normal for so long, was beginning to fade away.

There are more feelings then happy and sad.

There is middle ground between right and wrong.

No one is completely good or bad.

Some days, I miss black and white. I miss the simplicity of childhood. But when I truly look back, when I stare long and hard at my past, I realized that the color has always been there, and it is slowly replacing a longing I have always had to see the world fully.

Nothing will ever be fully in color.

I look through the tinted lenses of my morals, my upbringing, and my biases.

Emotion changes the sharp, precise illusion of logic, in a way that I both appreciate and despise.

With every day, with every new experience that comes, with each new perspective, my vision gains a new color.

I try hard to see every color of the world, with the knowledge that I never will be able to. Colors are infinite. There are no limits to the ways a situation can be viewed.

This is why I want others to share their colors.

However, before I can understand anyone else’s colors, I must understand my own. I must look inside myself, and understand the factors that color my world.

My own understanding will never be complete either. As I continue to grow and change, my worldview and internal perspective constantly shifts, causing me to reevaluate my inner colors. And as this happens, I begin to notice something deeper.

Some emotions will never have words.

Instead of being finite concepts, right and wrong are fluid concepts that no one can fully grasp.

No one is good or bad, but instead everyone is their own unique mess of organized chaos.

Over time, my world has gone from black and white, to having color, and now I realize that even color is fluid, constantly changing, and will never be quite complete.

The urge to share my inner colors with the outside world is one of the main reasons I blog.

I invite you to do the same.

Activity note: I will hopefully start posting more regularly this summer. Meanwhile, feel free to check out my Tumblr page, which I am more active on.

Can Speech Challenged Students Get an Appropriate Education?

This is so amazingly articulated. Everyone has the ability to learn, and it is the barriers of society that have taught us to presume otherwise. The solution is not a denial of disability, nor is it a denial of competence. The solution, as Emma articulates beautifully, is the realization that the basic human right to communicate and learn applies to everyone, regardless of their neurology or method of communication. Schools must learn to adjust to the needs of students, rather than attempting to fit them into boxes of any sort.

Emma's Hope Book

     What would you do if the whimper in your heart could not find the right words to speak? What if you couldn’t control the things you felt compelled to say, even if you knew those who heard you would not understand? Speaking is not an accurate reflection of my intelligence. Typing is a better method for me to convey my thinking, but it is laborious and exhausting. So what is to be done with someone like me? Is it better to put students like myself, of which there are many, in a segregated school or classroom, is inclusion the better option or is there another answer? I was believed not capable enough to attend a regular school, nor was I able to prove this assumption wrong. In an ideal world these questions would not need to be asked because a diagnosis of autism would not lead to branding a person as less than or inferior. Those who…

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Time and Time Again

Starting around first or second grade, I would automatically reflect on how much I had changed in the past year, often laughing at how immature I was at another point in time. That is my first memory of having an understanding of how I was growing and changing as a person as I aged.

Towards the end of sixth grade, I developed a bit of an obsession with time. I became acutely aware that time was passing constantly; a both magical and terrifying feeling.

Now, as I head into the second half of 8th grade, the last semester at a school that I love, my awareness of both time and personal change affects me in a completely new way. Part of me wants to go back in time, maybe to the beginning of middle school, and do it all again. Part of me wants to skip ahead to see what the future has to offer. However, I think the biggest part of me wants to remain right here in the present. I often wish that I could stop time for a while, or somehow gain the ability to go through life without the acute and frequent awareness of this mysterious dimension.

Due to my extreme reliance on routine to feel secure, changes and uncertainty tend to terrify me. Even a special schedule at school is enough to interfere with my sense of security. The future all seems like one big uncontrollable mess with this mindset; one that I am certainly not eager to move forward with. This is complicated by the knowledge that I am constantly arriving at the future, and will continue to do so as long as I live.

And yet, there is also a certain beauty in time, as it gives me the reassurance that no other entity can go on forever. As I grapple with big questions and think about the future, I am reassured that no pain will be eternal; only time will. It is only with this in mind that I truly feel comfortable facing the future.

(Image source: http://publicdomainpictures.net)

Coming Out of the Mental Health Closet, Part 1

“Something I want you to know about me is that I have Obsessive-Compulsive Disorder, and something I never want to hear again is that OCD is all about being neat, because it’s not. It’s a real disorder.”

These were the words I said to my SEL (Social Emotional Learning) class a few weeks ago. It was the first time I had ever come out in person, and the third time I had ever come out in a non-medical setting. It was absolutely terrifying, but I had expected that. What I hadn’t expected is how relieved I felt afterward. There are so many negative stereotypes associated with Mental Illnesses, and quite a few associated specifically with OCD, that I had been terrified to come out for 3 years, ever since I was diagnosed. Finally saying the words felt like a rush of all the adrenaline and relief that had been swirling in me for the last 3 years. I am very lucky that all of the people I have come out to so far have been extremely accepting, and I recognize that many people do not have safe, accepting communities they can come out to.

I want to strive for a world where I don’t have to “come out.” Where I don’t have to worry how people will react. Where I don’t have to fight stereotypes constantly. I dream of a world where society recognizes that mental illness is nothing to be ashamed about. I dream of a world where the topic of mental health isn’t danced around delicately. I dream of a world where everyone has affordable access to adequate mental health treatment. I dream of a world where I can simply say “By the way, I have OCD.” and no one will assume that I am a neat freak, a faker, or someone who can’t be trusted.

Unfortunately, this is not the world that we live in.

So I’ll keep advocating. I’ll keep speaking up when I hear the term “OCD” used incorrectly. And, whenever I feel like it’s the right time, I’ll keep coming out of the mental health closet until I don’t have to any more.

(Disclaimer: I am not recommending that people come out if they are not ready to yet, especially if doing so could possibly cause them physical or emotion harm from others. If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. You can also reach the Crisis Text Line by texting “START” to 741-741. Head here for a list of crisis centers around the world.)

Silent Laughter, Silent Tears

I laugh late. Or randomly. Or for too long. Or not at all. A Monty Python scene that I watched last month could make me randomly burst out laughing during a math test. If someone tells a joke, I won’t always laugh, but if I do chances are it will be just about when everyone else stops laughing, and I’ll keep going for several minutes.

I don’t cry happy tears. It could be the most heartwarming, emotional movie and I still wouldn’t cry unless it was sad or scary. Even then, I probably wouldn’t cry. I cry when I’m frustrated, and it feels like no one understands. I cry when things feel hopeless. I cry when I panic. I cry when, well, when I’m sad, internally. I rarely cry in public, and when I do, it’s silent.

Most of my external emotions are controlled by what happens inside my brain, not outside. For that reason, I have been called tough, sensitive, silly, and serious in response to things that happen outside my brain, depending on my internal perception of those things. Depending on how people expect me to react in a situation, I could come across as any of those things. If something sad happens, and I don’t cry, I’m either called tough or insensitive. If someone tells a joke and I don’t laugh, I’m called serious. If I start laughing randomly, I’m called silly. If a teacher corrects me harshly and I cry, I’m called sensitive. I am all of these things, but the way I come across to other people does not represent all of me. Everybody shows emotions in different ways, and if those emotions aren’t shown the way we expect them to be shown, then we assume they aren’t there. I can feel sad and not cry. I can feel happy and not laugh.

This doesn’t change who I am.

Totally Abnormal — A story explaining my blog title inspiration

Hi again! I’ve been quiet around here for the past few weeks. I started school recently, so even though I have a few posts written, I haven’t had much time lately to proofread. I’m hoping to start posting more often once I get into a good routine for school.

The following story written in children’s book form was inspired by a conversation I had with a friend. In the part of the story where Brown Squirrel and Fox are talking, Brown Squirrel’s words in the conversation mostly represent my part of the conversation, and Fox’s words represent my friend’s words. This same conversation also inspired the name of my blog, so I wrote this story to give some explanation behind my blog name. Enjoy!

The Brown Squirrel dragged his feet on the ground and kept his head down on the way to school. He new what was waiting for him when he got there. Sure enough, just like always, he was met with teasing and taunting he received from the red squirrels at school

“How come you talk funny?” one of them would ask, with a mean tone in his voice

“How come you gather your nuts from the street instead of from the trees like us?” Another would pipe up, his mean tone hidden behind his fake innocent voice.

“Why is your fur brown instead of red like ours is?” A third asked, as the other squirrels burst out laughing.

“Why can’t you just be NORMAL?” several squirrels would chorus, all looking at each other deceivingly

Brown Squirrel slowly dragged his feet into the school, keeping his head down all through the long day.

When he got home, he ran to his friend, Fox’s house. He said, “Fox, what is normal? All of my friends keep telling me to be it, but I don’t know what it is. I like my brown fur. I like the way I talk. I like the nuts on the street. I couldn’t change any of it, even if I wanted to! And what is this “normal” they keep telling me to be?

Fox took a deep breath and sighed.

“Normal is something that the squirrels are always telling you to be, but no one really is.”

“No one? Not even them?” Brown Squirrel asked.

“Yup, no one. Not even them. They might even be telling you that because they feel bad because they want to be normal.”

“But if no one is normal, then how come they want to be normal?” Asked Brown Squirrel

Fox paused. “Why do you think it is?” he asked Brown Squirrel

Brown Squirrel thought for a long time. Finally, he spoke: “I think the concept of normal is flawed.” He said. “I think it’s something that everyone compares themself to, but no one ever is. Maybe the red squirrels want to be normal so badly that they tease me for not being normal, so they can feel better about themselves. But I’m not going to do that. I don’t see why I should strive to be something that doesn’t even exist.”

Fox nodded. “I agree with that. I also think that maybe something can be normal for someone, but not someone else.”

“That makes sense!” said Brown Squirrel “For me it’s normal to have brown fur, and to talk the way I do, and to gather nuts from the street. For the red squirrels, it’s normal to have red fur, and talk the way they do, and gather nuts from the trees.”

The next day at school, when the red squirrels began their usual teasing and taunting, instead of hanging his head and dragging his feat, Brown Squirrel lifted his head high, and shouted at the top of his lungs “I’m not normal, to you, but I’m normal for me. I like the way I am, and I’m not going to change. You all are normal for you, but you’re not normal to me, either. No one really is.”

Brown Squirrel ran inside the school without waiting for a reaction. He didn’t care what the other squirrels thought. He knew he was normal for Brown Squirrel, and that was all that mattered.

Photo Source – Chris Paul, Wikimedia Commons

Getting “Used To It”- How SPD affects me

Since I read a lot of blog posts related to Sensory Processing Disorder (SPD), I have seen many people’s descriptions of what SPD is:

“The sensory sliders in my brain are all over the place.”

“My sensory cup is too big for some senses and too small for others.”

“Everything is multiplied for me.”

These are all good descriptions of SPD, but I wanted to think of a quick one. A simple one. One that would help people that had no prior knowledge of SPD know how oversensitivity feels.

I don’t get used to things.

This would be my description of oversensitivity; meaning my body is extra sensitive to certain sensory input. Oversensitivity isn’t the only way that SPD affects me, but it is the one I have to explain to other people most frequently.

Most people get used to unpleasant sensory input after a bit, but I don’t. It will either stay at the same discomfort level or get worse.

Most people get used to the way the tag on their shirt rubs against their skin after a few minutes. I don’t.

Most people get used to the noise of the party after a few minutes. I don’t.

Most people get used to the bright fluorescent lights in Target after a few minutes. I don’t

Most people get used to the mushy texture of rice after a few bites. I don’t.

Most people get used to the smell of Lysol in a recently cleaned room after a few minutes. I don’t.

Most people get used to the scratchy feel of jeans after a few minutes. I don’t.

This could go on, but you get the idea; I don’t get used to the everyday input that most people do. Most of the time this is a pain in the butt, but this piece of knowledge can be used as a coping strategy if I use it right. If I’m in a loud room and I don’t have earplugs, I can cover my ears for intervals of a few minutes to keep myself from getting overloaded, and so I can stay in the room. It is the progressive noise that gets to me, so covering my ears helps me “reset.”

So, to all of the people who tell me that I’ll “get used to” the noise or the bright lights or the scratchy feeling of jeans, I know you mean well, but I know my body and I know I won’t. Please instead help me cope with the sensory input, and know that this is something that doesn’t come easily to me. Thank you.

If you want to learn more about SPD, here are a few sites with great information:

http://www.sensory-processing-disorder.com/

http://spdsupport.org/

http://www.thesensoryspectrum.com/

The Problem With Paying Attention

I don’t have any particular issue with eye contact. It doesn’t make me uncomfortable to make eye contact with someone, and I will generally do it automatically at the beginning of a conversation or lesson at school. It is sustaining eye contact where I sometimes run into issues. I blame this mostly on other visual stimuli.  A conversation might go something like this:

*makes eye contact*

*listens to what person is saying for approximately 20 seconds*

SHINY THINGS!!!

*no longer making eye contact*

I will still likely be hearing and processing the conversation, though if the visual stimuli is extremely distracting then I might not be.

Other times though, especially at school, I will have trouble paying attention if I am looking at the speaker because I am so focused on trying to look at the speaker/sit still/pay attention. Trying to do this would look something like this in my brain:

“I’m paying attention! I’m making eye contact! I actually look like I’m taking in what the person is saying! I’m good at this! Wait, now I’m not paying attention. Pay attention! Sit still! Try to actually take in what the person is saying!”

…

“Wait, what on earth did the teacher just say?”

On the other hand, if I look at the table/my notebook/the shiny things, I am much more likely to take in whatever the person is saying because my mind is not occupied with telling myself to pay attention. So, one way that I can improve my focus is to not look at the person talking.

The other thing I sometimes do is lip-read. This is not particularly because of audio processing issues, but because I am then receiving constant visual stimuli that matches up with the auditory stimuli I am receiving. In other words, the stuff I’m seeing matches with the stuff I’m hearing, and I’m less likely to get distracted by other stuff I see.

So, to truly pay attention in school, I have to either not look at the teacher or look at them constantly. Both techniques have some disadvantages, though. Many people think that if a person is not making eye contact then they are not paying attention, which is clearly not true for me (and many other people) due to the reasons described above. However, the lip-reading technique makes it nearly impossible to take notes or look at visuals that the teacher is using such as a white board. I use both of these techniques in school, often interchangeably in a short period of time.

So, a message to all of my upcoming teachers: 1. Just because I’m not looking at you doesn’t mean I’m not paying attention. 2. Just because I’m looking at you doesn’t mean I’m paying attention. 3. I’m not staring at your mouth because you have lettuce stuck in your teeth. 😉

I personally think society should lose the whole idea that eye contact is so important. I wish we had some other method of communicating the fact that we are listening, but I have no idea what that would be.

Anyone have ideas? Or have your own focus techniques? Share them in the comments!

When Feelings Speak Louder Than Words-#1000 Speak for Compassion

I love words. Writing words allows me to express myself like no other way does. Words swirl around in my brain, and eventually make it to my fingertips in the form of expression. However, words also have a certain limit to them. For example, take the term “Thank you.” Here are some situations where I might say “Thank you.”

*Someone holds the door for me*

“Thank you!”

*The woman fixing the vending machine gives me my snack for free*

“Thank you!”

*My friend lets me rant to her over chat on a night when I feel like I can’t take it anymore*

“Thank you!”

In each case, it was the same two words, yet the level of and reason for gratitude was completely different. Looking at only the response words, it is not clear that the three situations are even different at all. This is one example of how words can sometimes have limits that do not allow them to express a true feeling.

Here’s a slightly different example.

There is a myth that people with autism don’t feel empathy. This post from Seriously Not Boring is an example of one way that someone with autism feels and expresses empathy. It reminded me of an experience I had in second grade.

One of my classmates had a sore throat and trouble breathing, so she went to the office. She came back after a while with a glass of water, feeling better. During this. I had started crying and was on the verge of having a panic attack. My teacher sent me to the office, where one of the secretaries talked to me. She said something like, “I know. I know it’s hard. You feel so much empathy for everyone. You are so caring.” Her words meant a lot to me. I realized that I had been so overwhelmed by the feelings of my classmate that I hadn’t known how to deal with them or express the feelings in words.This is common for people with anxiety, so it is not surprising.

I was also reminded of this recently in a different way. I am currently volunteering at a summer camp, and there was a kid in one of the groups, let’s call him “Dylan.” He was maybe 5 or 6 years old or so, and was a little “different” from the rest of the kids. He had trouble expressing himself in words, and was having a hard time participating in the games. I don’t know if he was on the autism spectrum or just a bit “quirky,” he was having a hard time participating in the game we were playing. At one point, one of the other kids in the group began to cry. One of the counselors went over to comfort him. Dylan went to the edge of the boundaries for the game we were playing, and stared at the other kid, visibly distressed. “It’s okay Dylan, he’ll be okay. I know you don’t like it when people cry,” one of the other counselors said to him. I immediately thought of my experience in second grade. I knew what he was feeling. Overwhelmed by the emotions of his classmate. Unable to express the feeling in words.

Now, you’re probably wondering what all this had to do with the “Thank you” example above. Both cases are examples of the “correct” words not being appropriate or available in the situation. Yet, so much of life in our society revolves around the expression of words, that the situation with Dylan, or the one with me, could have easily been misinterpreted. Instead of acknowledging it as empathy, the adults in the situations could have very easily brushed us off as paranoid, busy bodies, or crybabies, all of which would have only made the situation worse. By understanding that we couldn’t express ourselves in words at that moment, the adults in each situation recognized that we were experiencing overwhelming empathy, not just being paranoid.

So, next time you see someone overwhelmed by their emotions, or hear someone else claim that they can’t feel empathy, remember that they may in fact be experiencing empathy so strong that they can’t express it in words. Instead of judging them, accept and recognize their unique way of expressing empathy when the feelings speak louder than the words. That is true compassion.

From the #1000 Speak For Compassion Website:

“Bloggers from all over the world are coming together to talk about compassion on the 20th of each month.  The 1000 Voices Speak for Compassion movement was born when blogger and author Yvonne Spence organized over 1000 bloggers to post about compassion in one epic event on February 20, 2015.  The response was so great that it was decided to continue the #1000Speak project on a monthly basis, with a different topic each month.”