#AbilityChat and Making Medical Care Easier

An animated picture of a tea setting with the words "Click here for more information about #AbilityChat" next to it. "*No tea was harmed in the making of this chat" is the subtext underneathAll my life, I’ve tended to attract people who didn’t really “fit in” with everyone else. I’m sure a lot of that had to do with the fact I’d spent so many years in special education, but even after I’d been mainstreamed and left high school altogether, the pattern held.

Now, I’ve met quite a few parents of children who happen to be neurodivergent. These kids range from nonverbal kids on the ASD spectrum to kids with LD. Interestingly enough, many friends from my teenage years also have neurodivergent kids.

One of the most trouble commonalities I’ve noticed between their online posts and rants is the difficulty they have in finding decent medical care for their kids. From what I’ve seen, the group pediatricians seem to have the most trouble with are kids with autism.

Although autism isn’t nearly as common as some other forms of neurodivergence, it’s still highly likely that these doctors will see at least one child on the spectrum during their careers, especially if they’re working in an emergency room or urgent care clinic.

From speaking with adults with neurodivergence, I know they face similar challenges. Yes, it’s absolutely different when you’re a child or you’re advocating for a child, but it’s still a very real problem.

I haven’t had much personal experience with that sort of thing, mostly because, although dyslexia is technically a medical diagnosis, it’s not something treated with medication. Now that I also have the ADHD diagnosis under my belt, I wonder how much that will change, especially if I have to switch clinics for whatever reason.

Tonight’s #AbilityChat centers on this issue, so it can be brought further into the light and to brainstorm ideas about how to make the experience of getting medical care a little less difficult than it needs to be.

Really, computer? I already met the requirement, so WHY?

As much as technology helps us, it can hinder us, too.

Late last week, I finally had an appointment with my new schools Accessibility Office, formally known as the Disability Office. One of my most pressing concerns was in making it through the math placement test without needing to take, and pay for, a bunch of remedial math classes.

As stated in entries past, I have big problems with math. I used to think it was just because my brain didn’t think in a way that handled equations well, but now I know it’s an executive function thing.

While I’m tempted to figure out how to get better with higher math, there’s no real reason to do that at this point. I’m not interested in professionally pursuing math intensive fields, and, let’s face it, the most complicated every day math isn’t so bad with a calculator.

For basic calculators from Microsoft.

If you’re on a computer, you can open as many calculators as you want. So many calculators!

That’s right, kids, unless you’re making your own sewing patterns, designing your own house or plotting your own landscaping, most adults just don’t need higher math. Addition, subtraction, division and multiplication are pretty much all general adulthood requires.

Anyway, I don’t know what it’s like in other states, but Minnesota allows students to take a logic class in order to meet the math requirement for an AA in writing. I had done that, passed and had thought that was behind me.

That said, when I got the paper telling me I had to take, and pass, that math test just to get in, I was less than thrilled.

On Thursday, I brought that up with the person who was helping me out. It had confused him, too, so he called someone else to see what the deal was.

Apparently, the computer forces a figure to be entered into that slot. Since I’d already required the math requirement for my degree, I didn’t even have to pass. I could randomly pick answers, get a zero and still be able to enroll with the school.

I still plan on doing some studying and doing my best on the thing, but still, it seems like a lot of wasted time and effort. All because there has to be something entered into that field. There’s no work-around, either.

So, this week, I’m going in on Thursday to take the test in the Accessibility Office. The result won’t matter, but I thought it would be good to get an idea of how they handle testing for people who need double time.

The somewhat ridiculous thing is, I’m still nervous about it. I wouldn’t say it’s full-blown anxiety, but butterflies still decide to tap dance around my stomach when I think about it.

It doesn’t matter what I score on the thing, belly bugs. Calm down already.

15 ADHD-I Steps to Updating A Blog

Here are the steps I’ve followed to write this entry.

Step One: Realize I haven’t written anything yet today.

Step Two: Notice the ice pack I’ve been using for my mildly sprained ankle is no longer cold.

A forest with a lake of blue water and mountains in the distance with a peek of Lake Superior. The sky is blue with white clouds.

This is the overlook I hurt myself getting to.

Step Three: Get up for ice pack.

Step Four: Look in fridge and wonder why I’m in the kitchen.

Step Five: Remember there are pictures on my phone that need to be moved over to the computer.

Step Six: Hobble to office and return to computer with USB cord for phone.

Step Seven: Remember the ice pack situation. Get up again.

Step Eight: Return to kitchen. Look in fridge, think about cleaning it and making a grocery list.

Step Nine: Grab my weekly soda and return to computer.

Step Ten: Remember ice pack. AGAIN.

Step Eleven: Return to kitchen. Return with bag of pretzels.

Step Twelve: ICE PACK. I NEED THE ICE PACK.

Step Thirteen: Return with ice pack, elevate foot and apply pack. Realize I need to log into blog site.

A bandaged foot with an ice pack on it.

Well, I’ve accomplished this at least.

Step Fourteen: Enter wrong password. Reset password before I’m locked out.

Step Fifteen: Finally write the entry.

And that, folks, is how this attentionally challenged person updates a blog in 15 quick steps!

Jade Street Comic Review! (Mild Spoilers)

I am always on the lookout for new fiction with neurodivergent representation. Often, I find it in the least expected places, which is why I wasn’t super surprised to find it in Artist’s Alley in CONvergence this year.

A comic book titled Jade Street Protection Services, with a picture of two girls sitting back to back in front of a brightly painted brick wall. One girl wears a pink hijab, a matching shirt and a black vest over a long sleeved shirt, and the other has black hair shaved on one side of her head, wearing green lipstick, a black jacket with a green tube top underneath, faded jeans and untied black and white sneakers.

Such a fun comic. And autographed!!

After chatting briefly with Katy Rex, I decided to give the comic a try.

The main characters all attend a school reminiscent of a modern, Americanized Hogwarts, but with a sort of X-Men-ish spin to it. It has a definite Sailor Moon feel to it, too, because there are quite a bit of Magical Girl elements thrown in. There’s more cultural and neurological diversity within these five girls than in most mainstream comics I’ve seen to date, but it’s well done enough not to feel forced.

For me, the characters make or break a comic.

The main character, Emma, is autistic and nonverbal. She narrates the book, but doesn’t speak at all, save for text messaging. The writers and artists include her stimming in certain scenes throughout the book, and include a scene demonstrating some of the bullying so many nonverbal folks deal with in public settings.

However, they also demonstrate how wonderful it is when peers step up and actively include Emma in their shenanigans.

A 3/4 page of the comic depicting Emma texting with two of the other characters. In the last panel, two of the characters send single emoticons, while the third replies with "OK, BUT I'M BOOOOOORED" followed by seven emoticons.

As a quick aside, I’ve also found that texting is a lifesaver on days where words don’t want to word for me. Others with language problems have shared similar experiences with me, as well. Thank you, autofill!

As great as Emma and the rest of the characters are, the one who really resonated with me is Saba. I’m not sure if this was intentional, but I’m 99.9% sure Saba has ADHD. She does so many of the same things that I’ve done long before my diagnosis of ADHD-I this year.

I’m not exactly hyperactive, which is why I have that Inattentive tagged on at the end, but being completely unable to shut up about needless details when I’m feeling discombobulated continues to be a problem. Saba demonstrates it perfectly in the below panel.

A panel where Saba rushes to class, explaining why she got there late in a wall of words. One of the other characters responds with, "Wow. Um, BREATHE."

I did the same thing when I was younger, and I find myself doing it to this day. I also abuse emoticons like Saba does in the second picture.

The fact Saba adopted a bug and named it elsewhere in the comic had me laughing, because I have a habit of naming things. When it comes to insects, for example, I’ve named all the spiders in and around our house Lloyd. My houseplants are named after Addam’s Family characters.

Another thing I heartily appreciated was the fact that romance had an extremely minimal role in the book. One of my pet peeves is when female characters are reduced to a yearning for marriage and babies. Although this aspect did play a part in the developing story line, it’s not done in the way most writers do for female-led books.

While I won’t expand on that, I will note that one of the main characters was established as gay early on. Most importantly, this aspect of who she is isn’t the main differentiating element of her character.

The only thing I didn’t care for was the general aesthetic, but that’s just a personal taste thing. Despite the fact I wore a pink robe most of the weekend*, I tend to prefer a darker look. Jessica Jones is a good example of my tastes. However, I know that’s not a general preference for the intended audience, so I understand why the bright, sparkly look was adopted.

That said, the story and characters vastly outweigh the conflict in predilection.

Of course, like all good continuing stories, it ended on a cliffhanger. I would like more, please and thank you. I’m already following Katy on twitter, so hopefully I’ll catch any updates.

If you’d like to read this book, contact your local comic shop, or buy directly from the publisher’s web page, here.

*It was a gift! I would have chosen a different color, but it’s fuzzy! And comfy! And it’s DESERT ROSE, not pink. And it has POCKETS! And did I mention it’s fuzzy?

Panel Review: Exploring Neurodiversity

One of the absolute coolest thing about neurodiversity and disability panels at CONvergence is how eye-opening they are. At least, that’s the case in my experience.

A photo of a panel listing - black text on white background. It says "Exploring Neurodiversity: The New Frontier. DoubleTree Plaza 3. Fact: Human brains vary widely. Theory: this fact is totally okay. Join us in exploring the variations in the human mind and how "disorders" may just be differences. Emilie Peck (she), Jess Banks (mod,she), Olivia James (she), Richard Wielgosz (he), Sarah Ravely (she)"

I was the only allistic panelist, though I was also the only one with ADHD-I and learning disabilities. I personally would have liked to see more of a diversity of neurodivergence represented, but it wasn’t a problem.

During the conversation between panelists part of the hour, we covered a little bit of our respective experiences, how they shaped our lives and just what neurodiversity is. We also discussed the impact of diagnosis, when we were each diagnosed and the differences it made in our lives.

For me, it strongly reinforced just how similar our experiences are while still being highly individualized. No two people experience life in the same way, even if they happen to share a label, but the societal reactions to the “other” is always stunningly similar.

Our audience was standing room only, which surprised me a little bit, considering there were 8 other panels taking place at the same time and the other things going on elsewhere. The questions they gave us were all great, and I was incredibly happy to have so many different folks attend.

I was especially impressed with the teachers who came and took part. As hard as I can be on teachers, I still greatly admire those who take the plunge. My respect levels skyrocket for those willing to go the extra mile to help their students who struggle the most.

There was one gent, who I kept running into over the course of the weekend, who was moved to tears, because he had felt so alone. This was the first time he was able to openly talk to others who were also autistic in person. That sense of “Hey, I’m not alone!” is a big reason why I enjoy taking part in those types of events and why I run this blog.

Regardless of label, that isolation and sorrow is another thing we hold in common. Sure, there are isolated stories on the news, but LD, Autism and all other forms of neurodivergence just aren’t talked about. Those of us in the neurodivergent neighborhood have faced enough bullying and stigma that we just don’t have the energy to deal with it all the time.

To my surprise, I was approached by a couple of people after the panel. One gent suggested a podcast from the Nerdist that involved dyslexia (or ADHD?) and a lovely young woman wanted a little more information and advice about dyslexia. I still have to look up that podcast, and I hope the stuff I pulled off the top of my head helped her out.

Although I’ve only been on four panels to date, I have been to quite a few more. I have to say, this was one of the best ones I’ve taken part in. I’m already looking forward to next year!

Perhaps a title would be a good idea.

A white identification badge with a long stream of ribbons attached to it.

CVG2016: Year Of The Badge Ribbon

This year’s run-up to CONvergence was pretty brutal. I was already sleep deprived by the time Thursday arrived and I was pretty non-functional by the time I got home on Sunday.

Monday, I had to call into work, because I was feeling so poorly. I think I was conscious for something like 4-5 consecutive hours that day. Tuesday, I managed to finish my shift, but slept the rest of the day (and night) away. I think that exhaustion also had something to do with fighting off a mild bug I picked up somewhere along the way.

Today, I’m finally feeling better, for the most part, but overwhelmed at everything I still have to do in preparation for next week’s camping/hiking trip and the frustration I’m having with STILL not having the paperwork for my new diagnosis in order to get accommodation for school.

Seriously, this is just ridiculous. I started this five months ago in attempt to get everything in order well before school started, but that didn’t seem to work.

So, what does all this rambling mean for the blog?

Well, I’ll number it:

  1. I’m planning on my entry about the Neurodiversity panel to be posted tomorrow.
  2. I picked up what looks like a fantastic new comic to review for the blog, which will hopefully be posted on Friday.
  3. IF POSSIBLE, I’ll schedule entries for next week while I’ll be donating blood to Lake Superior Mosquitos.
  4. No #AbilityChat tonight, BUT next week’s is going to be hosted by one of the awesome regulars, Ruthie.

So, hopefully this will all go according to plan, and if it doesn’t, hopefully it will all at least happen.

Now, back to your regularly scheduled Wednesday.

Save

Spreading the word

When you work in retail, you learn quickly that merchandise for the next season comes in long before the season in question actually happens. That said, I spent most of my shift setting up fixtures in which to put the fall seasonal stuff when it comes in tomorrow.

Yes, we’re getting Halloween stuff already, including pumpkins.

A photo posted by Emilie Peck (@peckemilie) on

The erasers and rings went VERY fast. The year before that, the little games and bouncy balls went as fast, if not faster, than the candy.

10 Second Conversation
My store manager happened to be there, and I decided to ask her if she knew about the Teal Pumpkin Project. It turns out the store will be selling teal pumpkins, but she didn’t know why.

So, I told her. She seemed pretty interested in it, but I don’t know if the store will be taking part come Halloween.

I know I will, at least.

The project itself isn’t the point of this entry, though. One of the most important ways of spreading the word about neurodivergence, neurodiversity in general and disability is to actually talk about it in your personal life.

Obviously, I take it a little further, what with this blog and the panels I take part in at the convention I attend, but chatting with people you know goes a long way.

You Choose How to Do It
As someone who is neurodivergent, it has been one of the most freeing choices I’ve made to date.

That said, I completely understand why people work hard to pass as neurotypical. I did that for many years, and have experiences the bullying that comes with closed-minded people in power. Not all people are open-minded enough to actually learn about others’ experiences, and too many of them are in powers in institutions like companies, schools and the government.

There’s nothing wrong with not admitting your neurodivergence or invisible disabilities if you’re not comfortable in doing so, but coming back with facts instead of stereotypes could open many more eyes than staying silent. Many minds change when faced with facts.

You can always use the old standby of “I know someone who’s…” or “I have a cousin/brother/sister/parent/whatever with…” to add credence to your words if you’re not comfortable about talking about your personal experiences.

I strongly encourage as many people as possible to speak up when the topic comes up. The only way we can beat stigma is to eradicate it with accurate information. Simple ignorance is cured by education, and willful ignorance is harder to maintain when few people back it up.

Developmental Vs Acquired Disability

An animated picture of a tea setting with the words "Click here for more information about #AbilityChat" next to it. "*No tea was harmed in the making of this chat" is the subtext underneathHave you ever noticed that the vast majority of disability representation in stories, both fiction and none, involve a loss of ability? The characters lose limbs, functionality or sensory ability through illness or injury. Very rarely is there a character born without a limb or sense.

As discussed a while ago, disability is one of the most poorly handled topics in our stories. Disabled characters are almost always seen as needing pity, curing or as comic relief. Rarely are they seen as real people able to contribute meaningfully to their worlds.

It’s interesting, though, how rarely they’re born with their disability.

The topic bleeds into the real world, too. I’ve noticed there seems to be a sharp divide between people who’ve acquired their disability over the years as opposed to those who were born with it.

In many ways, I can understand. Those who are born with a certain ability level naturally learn how to cope as they grow up. They don’t know any other experience, and don’t miss previous ability levels.

Those who were born with normal ability levels tend to feel the sting of their new normal more acutely, because they remember how easy so many things were.

Naturally, this leads to misunderstanding and sometimes conflict.

In reality, we’ll all face changes in ability as we age. That just comes from being human. Our bodies break down at varying rates, no matter how well we take care of them and we all cope with that differently.

However, that’s hard to grasp until it actually happens, which is why it’s so hard for younger people to understand.

Regardless of the “why” or “how” there’s still always frustration over the topic.

Tonight’s #AbilityChat revolves around this issue. If it interests you, join us at 7 pm CST on twitter.

Is Gender Bias Part of My Math Problem?

Numbers and partially solved math equationsSomething’s been bugging me for a long time now.

It’s been writhing there, just under the surface of my every day thoughts and challenges. My doctor summarized it perfectly during our final appointment.

We were discussing the huge disparity between my linguistic achievements and the lack thereof in math. I had always thought I had some sort of neglected math disability, so it came as a shock when she said I can grasp math concepts just as well as anyone else.

No math disability. It all lay in my working memory and processing speed. A huge part of why I had, and sometimes still have, such a hard time reading and writing.

Yet, math was not prioritized in the same way reading and writing was, despite the fact I struggled so hard.

What could have happened if math was treated with the same level of care as reading and writing? Why was it missed?

The doctor summed it up perfectly when she said with her signature dry humor, “You’re a girl. Girls aren’t supposed to be good at math.”

A picture of a kindergarten aged girl - yours truely.

I was a cute kid. Wonder what happened.

The meaning behind that sentiment rings true. I was a girl, and our culture tells us girls just aren’t good at math. Reading and writing are more culturally fitting. All the more reason to concentrate on that.

Girls are supposed to be quiet and day-dreamy. So when my attention drifted elsewhere, it was just me being a girl. It wasn’t me being a child in need of help harnessing their focus.

Had I been a boy, would my day-dreaming have been a cue for extra help early on? Would an interest in math and science have been nurtured more? Would I have been taught to better focus on what’s at hand?

To say nothing of the emotional trauma I’d gone through at that age. Would the lack of pressure to conform to “lady-like” standards have allowed me to clue adults in to my suffering?

How many closed doors would be open now?

Would I have gone into medicine, as I dreamed of back in middle school? Maybe I could be well on my way to curing cancer or asthma.

Would I have gone into environmental science? Maybe I’d be the one to find a solution to the energy crisis.

Could I have gone into an entirely different route to build a career business? Maybe I could have helped make the business world more accepting of those with disabilities.

I don’t know, but in many ways, I feel cheated. I feel cheated out of what could have been.

I also feel guilty for feeling angry. When I was in school, LD wasn’t as well known as it was today.

Most adults who guided me through childhood did the best they could with what information they had at hand. How could I be angry with them?

I’m angry at the system. I’m angry at the centuries of sexism and bigotry that have shaped the uglier sides of our world.

Things could have gone so much differently for me, and so many other girls just like me. Maybe it would have been better. Maybe it would have been worse. I don’t know, but I do know that lost potential makes me sad.

At least now I can channel all that hurt and rage into something more productive. If we don’t change our world for the better, who will?

Adventures in Adult LD Testing: THE RESULTS

Yesterday, I finally got the results of all this testing. It’s hard to believe it’s taken over four months to get this taken care of. I’m still waiting on the report itself, since the doctor’s typist is on vacation.

Of course.

Anyway, there were quite a few interesting results.

An illustrated version of a woman labeled "education" examining a boy with a magnifying glass labeled "Intelligence Tests", titled The New Method. A smaller picture of kids being shoveled into pots labeled "Class A, B, C" titled "The Old Method"

The 1922 cover of the American School Board Journal, now in the public domain.

IQ Test
My overall score turned out to be in the average/above average range. Good to know, but that’s not the interesting part.

IQ tests are broken down into sections, and I had a huge disparity between two of them.

My language skills scores were up in the 96-98th percentile, which means my scores were “highly superior”. My general knowledge scores were, as she put it, “merely superior”.

General math, though? Yeah, that was the polar opposite. I was down somewhere in the 20th percentile. That would sting if I didn’t already know how terrible I am with math.

My spacial reasoning, which also has to do with certain math skills, was in the low average range. That probably explains why I have so much trouble with getting sizing right when I make clothing and constantly slam my knee into the corner of our coffee table.

The bruises. So many bruises.

Anyway, I scored in the average range in the other sections. Strangely enough, I’m average with math reasoning and theories. I just come crashing down when it comes to doing the actual math.

The unique part about all of this is that only about %.04 of the population have similar disparities in scores. Most people naturally have strengths and weaknesses, but they’re rarely as pronounced as mine are.

ADHD-I (Sluggish Cognitive Function)
I was surprised at this one, but the more I research it, the better it fits.

Sluggish Cognitive Function not only makes me sound like a defective metronome, but it’s also a debated disorder. Although the term has been around for 30 years, it’s only hit mainstream documentation within the last 5 years or so. Since the medical profession likes to argue over terminology and classification, there’s no consensus of whether it’s a subtype of ADHD-I or an independent disorder.

For those not in the know, ADHD-I is basically just ADHD without the hyperactivity. It used to be known as ADD before it was consolidated in the DSM.

Sluggish Cognitive Tempo further specifies the weaknesses in function. This means that my processing speed is incredibly slow. That makes it harder for me to focus on individual subjects for long, and manifests heavily in my attempts at math.

That huge disparity between language strength and math weakness also plays into it. I would naturally rather focus more on things I’m interested in or generally good at.

SCT also seems to make people with it very tired. I’m often sleepy during the day, but I usually just dismissed it as my diet not being as good as it should be. I hadn’t thought my neurology could have something to do with it, too.

Ah, justification to go to bed early and sleep in when I can!

NonVerbal Learning Disability (LD-NOS)
My working memory is absolutely terrible. I knew that already, but it’s nice to have it validated. I literally can’t hold more than two or three things in my mind, and needing to manipulate those things makes it worse.

In my case, it also applies to the poor spacial awareness. I’ll probably always have left-right confusion, have massive problems reading maps and putting jigsaw puzzles together.

While I’ve never had huge issues in making friends or getting along with people, I still have trouble with subtle emotional cues. That’s probably why I’ve never really noticed when people flirt with me or realize when people gossip.

The obliviousness to flirting has gotten me in trouble with angering guys on the street who think I’m leading them on, when I thought they were just conversing with me. The gossip bit is a sort of blessing in disguise. It used to hurt when I found out about it, but now I just don’t care.

I also scored low on automatic memory, as well. It’s like how when people drive, they get to the point where they have a routine they follow without thinking about it: get in the car, put on seat belt, use blinker for turns, etc. I have a much harder time with that process.

All of that combined with the slow processing speed has earned me this new label.

Dyslexia
Apparently, I’m now highly enough compensated that I no longer test as dyslexic. However, I still am. I still experience reversals and related dyslexic struggles, but I know how to deal with them more efficiently.

I also wonder if that non-verbal disability is an unacknowledged part of my dyslexia. In school, everyone only concentrated my reading/writing skills, but everything else went by the wayside. Naturally, I continued on with concentrating on language, which continued to build those skills.

What Does It Mean?
As far as school accommodations go, I’ll qualify for extended testing times and I may be able to substitute other classes for math. I don’t know how that’ll work, but I’ll ask about it. My doctor also suggested I should be allowed to use a calculator instead of trying to keep numbers in my head.

Considering I’m going back to school for language arts, I’m not entirely sure of why I’d need many math courses.

These new labels may also help me find ways of making my every day life easier, while doing a better job of reaching for my dreams.

The doctor mentioned that SCT has responded to ADHD drugs in studies, but I won’t be taking that route. My body tends to react unpredictably to many types of medications, and I’d rather not risk a severe reaction to those. ADHD can’t kill me, so why medicate it when there are other available options?

Instead, I’ll be working on some more lifestyle changes to help with focus, and I’m planning on researching behavioral therapy.

I haven’t researched LD-NOS a whole lot, yet, but that will be happening as well.

This whole process has taken a lot longer than I’d hoped, but I’m glad I’ve gone through it. It should help with school, but finding related tools will help me better my life, too.

In the end, isn’t that greater understanding of self the real goal of this testing? School is vital for building a better life, but it’s only part of it. Education goes far further than tests, lectures and grades.