Category: Self Advocacy

A Story of Dysgraphia, Anxiety, and A Middle School Project

8/7/2015

When we were in middle school, Caley and I were both required to draw maps. I mean, free hand draw a map of an entire continent, or a topographic map of Southeast Asia.

Caley and I got to talking about those maps this morning, and she revealed to me that at points she'd been thinking about breaking her arm so she wouldn't have to draw them. She was a MIDDLE SCHOOLER thinking about BREAKING HER OWN ARM.

And my family and I had no idea.

Sure, we knew that as someone with dysgraphia (common in people on the spectrum) writing hurt her - but we never realized it hurt her THAT much. And, yes, I personally knew how anxiety inducing those maps could be for those of a perfectionistic bend - I remember how painstakingly I drew the fjords of Norway and despaired over getting Crimea just right.

But I didn't know. I didn't realize just how bad it was for her.

I'll let Caley tell you the story in her own words:

"They were free hand-drawn maps. We'd do things like the 13 colonies, Europe and Australia. Europe was the worst. You had to draw the coastline and then map within five miles the different cities. And you had to color it in and make it pretty and it did matter how it looked. That's one of the few C's I got in middle school.

It hurt a lot because of my dysgraphia and then it extremely stressed me. I remember hurting myself throwing my pencil up in the air in frustration. The first map I didn't think of it. The second and third maps I definitely thought about breaking my own arm. Because it HURT to write that map. And it was SO stressful. I don't think my meds were really good back then so, along with going through puberty, everything just combined together.

I don't know how to describe it, it just hurts to write. I can do a little bit, but because of the way I have to bend my fingers so that I can have any kind of fine motor control over the pencil it becomes REALLY painful.

I don't think I ever told [other people] it hurt. Although it should have been fairly obvious by how I acted. I often shook my hand out, although that looked like stimming, and I hated writing. Typing was a lot better.

I think they did the maps to attract those into art into learning, but it kind of was punishing to everyone who didn't."

I don't know if there's one single lesson to this story.

Maybe how painful dysgraphia can be?

Or how bad anxiety can get?

The importance of teaching self-advocacy?

Or the way that these moments of anxiety can just go under the radar, because we don't realize JUST HOW BAD it is for the person?

The need for accommodations?

The way an assignment can be so frustrating that a child is thinking about hurting themselves to get out of it?

In the end, I think this story tells all of those and more.

-Creigh

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On Black and White Categories and Self Determination

8/6/2014

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I should be studying for finals right now (I have one tomorrow morning), but instead an incident keeps sticking in the back of my mind, and given that it's been a month since it occured and it's still staying with me, it may be worth writing about.

I was paying my bill at a restaurant, wearing an autism understanding t-shirt as I frequently do, when the cashier said, "I love your shirt! My brother's autistic." Well, I thought it was the coolest thing to find another sibling so randomly and I told her so. And then our conversation hit a rough patch:

Her: "So is your sister high or low functioning, then?"
Me: "Well, actually, she doesn't like to use functioning labels. She and a lot of autistic people say they oversimplify."
Her: "So she's high functioning then."

The rest of the conversation was great, but that little sticking point has stayed with me. We as a general population LOVE to put people into either-or categories. You're either male or you're female. You're black or you're white. You're an introvert or you're an extrovert. You're high functioning or you're low functioning.

The problem is, the world doesn't actually work like that. And by forcing people to try to fit into our contrived categories when they're clearly telling us they don't fit, we are doing them a serious disservice. So when I tell you that Caley doesn't like functioning labels, that's not a fact point to use to justify putting her into one. It's a right to self-determination, and a stance against a practice that she and so many other autistic people have spoken out against.

It's time for us to listen.

-Creigh

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Self-Advocacy is Only Half of It – On the Importance of Listening

7/17/2014

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So I may have had a minor freak out on my sister in the parking lot of a restaurant the day before my dentist appointment when she reminded me about it. I told her that I had tried to say I didn’t want to go to the dentist, that I hated them, and that I really didn’t want to go because it HURT. Plus, truthfully, I was a little bit scared. She told me that I could advocate for myself at the appointment and that if I didn’t want to, I didn’t have to go. So I went.

Now, my fear and hatred of dentist appointments and all things to do with teeth have several roots (no pun intended). For one thing, I once had baby teeth that needed to be pulled, and I remember the dentist putting his knee on my chest to pull it out. It hurt a lot and I kept on spitting blood, but no one seemed to think there was anything wrong with that. Seriously, he should have figured out that by the time he had to put a knee on my chest that maybe we should reschedule an appointment and come back later when the root had dissolved more.

My other issue came from my orthodontist. For one, they never really thought that my cheeks being torn up by the orthodontia to the point that flesh in my cheeks was hanging and bleeding. I had had my tongue drilled through once as well (by accident while they changing out some of the orthodontia). Seriously, I was eight or twelve at the time, they should have expected my tongue to move.

But the biggest problem at the orthodontist was when they ignored my fledgling attempt at self-advocacy. They had just increased the length of my orthodontia and it was causing my jaw to hurt horrifically. I told them to stop, but they ignored me.

Around five minutes after they completed the procedure, I purposefully bent the orthodontia with my mouth, hoping that would force them to fix the problem. Of course, everybody got VERY angry at me. And I had to make up a story about being bullied at school because of my orthodontia so they would finally stop getting mad at me. They then left it as it was beforehand without the increase in length.

While I was bullied for other things, I definitely wasn’t bullied for my dentistry. Truthfully, they were the real bullies by taking away by bodily autonomy and ignoring my claims of pain. [Creigh’s addition: And, really, in what world is bullying to be taken seriously, but someone telling you they're in serious pain is not?!]

So, yet again, four days ago I had to attempt advocacy about my mouth…with my mouth (joke intended). I told the dental assistant about how I had a sensory disorder and that brushing my teeth and especially flossing really hurt, and that she wasn’t to floss me. She kept arguing that it wasn’t sensory, it must actually be me grinding my teeth, like she knew my body more than I did. But finally she conceded and said she wouldn’t floss me, and was kind enough to give me numbing gel while she did her work.

Unfortunately, she then decided that it was okay to floss me. I don’t know why I didn’t speak up about that. Sometimes self-advocacy just feels like wasted energy. Because after you advocate for the first time and they won’t listen, you know they won’t follow your wishes at all. I’d hoped that would have ended when I became an adult, but it didn’t.

I went off, disappointed. Yes, my teeth were clean, but my wishes weren’t respected. And the numbing gel hadn’t changed the fact that I could feel every scrape against my teeth, taste the blood in my mouth, and hear the high pitched whirring of the tools.

At the end, I dared to ask her, hey, look, do you know of a toothpaste that doesn’t hurt? And she decided I was allergic to an ingredient in toothpaste. At that point, I felt too cowed to be able to correct her. So I didn’t get the information that I needed.

Afterwards, I shared the information with my sister, and Creigh shared with me that the receptionist had asked her if she would sign my HIPAA waiver for me, or if I was competent enough to do so myself. I’m freaking twenty years old. I’m an adult. Yes, I’m competent.

Unfortunately, this sort of issue has followed me around in all sorts of areas. Including medical, where not advocating for yourself can be an incredibly big issue. Multiple of my doctors have not listened when I told them I did not feel comfortable taking certain medications. And I felt cowed into accepting the prescription. Even though I tried to argue, they wouldn’t even listen. They just bulldozed over me.

So, like the girl in the orthodontist’s office so many years ago, I had to take matters into my own hands. I simply didn’t take them. Or I’d try taking the medications and then stop taking them by myself. Which led to dangerous withdrawal effects more than once. Because I didn’t feel like I could tell them I wanted to stop and have them listen to me.

All of this could have been avoided if I was listened to. Self-advocacy is only half the story. You have to have someone to listen to your words. Otherwise you just stop advocating. Because what’s the point?

So do us Autistics a favor and please listen to us when we try to advocate for ourselves? Because it’s really hard and because we’re going to have to be doing it for the rest of our lives.

-Caley

[Note: Post dictated by Caley and typed by Creigh, but these are all Caley's words. Image is of an array of dental tools on a tray.]

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On Meltdowns, Tantrums, and the Importance of Listening

5/14/2014

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Originally posted May 8th

I have always struggled to tell the difference between melt-downs and tantrums. I am VERY sympathetic about melt-downs, which look similar to tantrums but come from a place of the autistic person's pain and are uncontrollable, as opposed to a tantrum. But when a child has both tantrums AND melt-downs, how do you know what is what? I try using the situational cues to help me. Was there a sudden change, are there sensory hot points in the environment, is the child seeking out something or trying to get away from it? I try REALLY hard to identify melt-downs and I treat them very differently from tantrums.

But sometimes I fail. It's not often, but sometimes I do think a meltdown is a tantrum and only realize in retrospect. I cannot tell you how much I beat myself up over it, but I think you can imagine.

The last time I made this mistake, the child advocated for himself, which is the only thing that saved me from putting him in what surely would have been a full melt down situation.

He put himself in time out. His request, not mine. Up to that point, I'd thought that he was having a tantrum. But after he requested a time out (begged, even) I knew that something was off, because he HATES time outs. So, going on a feeling (even though it should have been obvious, given he was wearing my sunglasses and had his hands clamped over his ears and in retrospect I cannot BELIEVE I missed this), I complied. I let him have a time out, set the timer on my phone as I always do to show him how long his time out was going to be. I told him when the timer went off we would go in the room, because lying on the floor was not an option.

And he calmed. After that timer went off, he was much calmer, stood up (which I hadn't been able to get him to do before), almost made it in the waiting room...and then fell to the floor again, screaming. But once again, his advocacy showed me the way. There were three chairs set outside the waiting area, which he'd told me he wanted to sit in instead (and I'd about to agree to, before I was cut off by the screaming). I took him there instead, and lo and behold, he was calm.

Later I saw what the problem was. I was trying to take him into a waiting room, which is normally devoid of people, but on this particular day was full of a throng of very loud, very chaotic people. By putting himself in a time out outside and telling me he wanted to sit in the chairs, he avoided the room. In those long minutes, he did an amazing job advocating for himself, and thank goodness I listened to him.

I guess the point here is to listen. Pay attention to what someone on the spectrum is communicating, whether it's through words or behavior (because behavior is communication). They are their own best advocates and they know what they need.

-Creigh

My post here was originally inspired by this post by Diary of a Mom. If you haven't seen her Facebook page yet, I highly recommend liking it!

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Self-Advocacy

5/14/2014

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Originally published May 5th

When an autistic child tells me "no" he doesn't want to do something...well, I do a little internal jig. I feel the same way when he asks me to drop everything and draw him a picture schedule or give him a bear hug, or refuses to wear those 3D glasses in the movie theater*.

Why am I so happy over small events that others might brush off or think of as moments of frustration, not joy? Because these are all examples of self-advocacy. And when a child advocates for themselves, they're taking control and shaping their environment to best fit their needs. And that is not only awesome, that is to be encouraged.

Now, that's not to say I will give the child what they want every time. But when those long-fought-for words come out in a show of self-advocacy like this, I do my darndest to acknowledge them and praise the effort. And, yes, if it's a reasonable request, even if it's a pain for me to go through with, I do comply. Because learning that words matter and that self-advocacy is beneficial? That's a goal I'm willing to do a lot to achieve.

Blind obedience fosters dependence. Self-advocacy prepares a child for the world.

-Creigh

*I don't know what I was thinking taking him to a 3D movie!

This post was inspired by this post by Diary of a Mom. If you haven't liked her page on Facebook already, I highly recommend that you do so.

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A Story of Dysgraphia, Anxiety, and A Middle School Project

On Black and White Categories and Self Determination

Self-Advocacy is Only Half of It – On the Importance of Listening

On Meltdowns, Tantrums, and the Importance of Listening

Self-Advocacy

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