This is one of the most important topics I’ll post about on this blog (hence why it is permanently “stickied” to the top of my blog). I don’t expect to do much on it tonight. It’s too important to me and too overwhelming. *cut for sheer length*
I was reading a few articles on it on the train ride home tonight and felt so desperately mis-understood again, I started crying… So chalk up one mood swing for today. (Hey, only 1! That’s fine with me.)
When I was first diagnosed with Asperger, the people there understood. When I attended the workshops, everybody there understood. My mom kind of gets it. But everyone else I’ve ever met since then, nobody seems to understand. And although that has given me a decade to try and explain it, I have never done so successfully. Nobody believes me or I just can’t get it wrapped into words. So right now, I’m not even going to try to use my own words. I’m just going to quote from sites and pray that somebody out there will someday understand.
Here is a website. I haven’t read it yet, but I receive their emails and so many make me feel like someone out there understands. So I’m just assuming they have done a good job on this page:
Here is a quote from it (I am skimming it now):
“What are the symptoms of executive functioning issues?
Executive functioning issues can produce a wide range of symptoms. Depending on which skills your child struggles with the most, and the particular task she’s doing, you might see the following signs:
- Finds it hard to figure out how to get started on a task
- Can focus on small details or the overall picture, but not both at the same time
- Has trouble figuring out how much time a task requires
- Does things either quickly and messily or slowly and incompletely
- Finds it hard to incorporate feedback into work or an activity
- Sticks with a plan, even when it’s clear that the plan isn’t working
- Has trouble paying attention and is easily distracted
- Loses a train of thought when interrupted
- Needs to be told the directions many times
- Has trouble making decisions
- Has a tough time switching gears from one activity to another
- Doesn’t always have the words to explain something in detail
- Needs help processing what something feels/sounds/looks like
- Isn’t able to think about or do more than one thing at a time
- Remembers information better using cues, abbreviations or acronyms”
Here is another quote (I am crying again now):
“What skills are affected by executive functioning issues?
There are several key skills involved in executive function. But your child may not struggle with all of them to the same degree. Executive skills include:
- Impulse control: This is your child’s ability to stop and think before acting. Impulsivity can be a symptom of ADHD. Kids who have trouble with impulse control may blurt things out. They may do unsafe things without thinking it through. They’re likely to rush through homework without checking it. They also may quit a chore halfway through to go hang out with friends and have trouble following rules consistently.
- Emotional control: This is your child’s ability to manage her feelings by focusing on the end result or goal. Emotional control and impulse control are closely related. Kids who struggle with emotional control often have trouble accepting negative feedback. They also may overreact to little injustices. They may struggle to finish a task when something upsets them.
- Flexibility: This is your child’s ability to roll with the punches and come up with new approaches when a plan fails. Kids who are inflexible think in very concrete ways. They don’t see other options or solutions. They find it difficult to change course. They may get panicky and frustrated when they’re asked to do so.
- Working memory: This is your child’s ability to hold information in her mind and use it to complete a task. Kids who have weak working memory skills have trouble with multi-step tasks. They have a hard time remembering directions, taking notes or understanding something you’ve just explained to them. If your child has trouble with working memory, you frequently may hear, “I forgot what I was going to say.”
- Self-monitoring: This is your child’s ability to keep track of and evaluate her performance on regular tasks. Kids who have trouble self-monitoring lack self-awareness. They can’t tell if their strategies are working. They may not even realize they have strategies. They often don’t know how to check their work.
- Planning and prioritizing: This is your child’s ability come up with the steps needed to reach a goal and to decide their order of importance. Kids with weak planning and prioritizing skills may not know how to start planning a project. They may be easily overwhelmed trying to break tasks into smaller, more manageable chunks. They may have trouble seeing the main idea.
- Task initiation: This is your child’s ability to get started on something. Kids who struggle with this skill often have issues with planning and prioritizing too. Without having a plan for a task, it’s hard to know how to start. Kids with task initiation problems can come across as lazy or as simply procrastinating. But often they’re just so overwhelmed they freeze and do nothing.
- Organization: This is your child’s ability to keep track of information and things. Kids with organizational issues are constantly losing or misplacing things. They can’t find a way to get organized even when there are negative consequences to being disorganized.”
Doctors get scared when you try to explain to them that you have trouble with homework or whatever other shit. They change in that moment and they think you are asking for drugs. I don’t have to ask for drugs. I know how my body reacts to caffeine, theobromine, and Provigil. I know it wouldn’t accept drugs meant to help those with ADHD. I just want someone to understand and fully understand it and HELP ME.
But you don’t understand. There IS no way out. It’s a black hole that’s been there my whole, entire life. It doesn’t matter what checklists you make or colored diagrams. Time apps don’t matter, pie charts don’t work long-term. Organizing clothes by color for the day of the week only helps by a half hour in the morning. Trying to retain more than 2 digits in my head at once is impossible. You’ll never believe me or understand. This, I have given up on, it’s true. Finding places to put one item each day when I come home, then it’s just not there and you have no idea why it’s not there or where you placed it. I bought an Idiot’s Guide to Organizing Your Life and I literally fucking LOST IT for FOUR LITERAL FUCKING YEARS. It’s not a joke, although I joke about it. It’s not funny. I looked everywhere. I pulled things apart trying to find where I placed that book. You’ll never understand. It’s Giving Up. It’s my mom having to go in to the Art Instructor to explain why I shouldn’t receive an F just because I somehow managed to turn in my homework assignments for the whole semester into the wrong pile. At least I did the drawings somewhat on time, for god’s sake. That’s amazing right there. It’s night after night of crying over trying to write a 2-page paper and not being able to get past the first three sentences. It’s being accused of cheating because you don’t remember what the paper you just wrote was about. It’s never reading a textbook in your entire life although you spent hours reading the same paragraph night after night but not being able to get past it. It’s turning in maybe one or two assignments on time in the entire semester even when you are trying your absolute best and your mom is trying her best to keep you on task and focused but your mind just won’t stay with it for more than two seconds. It’s every exam taking two hours longer than it took the other students, and still getting a poor grade. It’s never having a big project even started until a few days before it’s due when finally your crying alerts your mom that you need help reading the assignment. It’s going to a special college where, at the time, there were only 2 in the entire country, so that you won’t have to try and focus on more than one topic at a time. It’s using college friends and classmates to sit next to you while they do their own studying and allow you to read your textbook paragraphs out loud to them so you can try to make it through paragraphs without looping them over and over again. It’s showing up late to every class, every exam, every work shift, every meal, every event, in a panic, missing half your stuff that you
were supposed to bring. It’s forgetting your locker combination over a 2-day weekend. It’s later forgetting your locker combination because you quit using your locker altogether because it’s safer to keep all of your stuff in your backpack at all times, regardless of the weight, because you left your essay in your locker on your way to English and the instructor gave you 0% because she won’t accept late work. It’s finally getting into a groove on a paper, after hours of staring at the screen and typing a few words only to delete them, only to have someone ask you a question, and you forget everything you were in the process of writing down. It’s missing every assignment given verbally because the teacher’s tone-of-voice changes when they stop lecturing and begin giving assignments, and EVERY. TIME., your mind wanders the minute they go out of lecture-tone. DAMMIT. It’s finally getting a diagnosis that allows your college to pay someone else in the course as your personal “note taker” because time after time you manage to write down all of the things that never show up on a test, and fail to notice any of what the instructor actually thought were the important points (and the note-taker writes down all verbal assignments too, THANK GOD). It’s your History teacher begging and pleading with you to pass the next test. It’s him literally going onto his knees in front of the entire class and begging you to try a different study technique this time, because you literally failed EVERY SINGLE TEST THE ENTIRE FIRST SEMESTER in spite of studying hard for every single one of them. It’s PASSING every repeated-test because you finally have a format in your hand (the failed test) that you can study off of (your own notes are shit). It’s learning that if you turn your notes into sketches instead, they are easier to remember (but still lack easily over half of the information). It’s almost causing dozens of accidents in your driving life thus far because of moments of indecision, mostly at intersections and merge lanes. It’s driving the people around you absolutely insane because you can’t make up your mind over the most trivial of things. All the time. And getting in trouble for it over and over and over and over and over and over and over and over and over and over and over and over (repeat x a million) again. It’s “what do you MEAN you DON’T KNOW?!” It’s your eye glasses doctor getting so flustered about you not being able to make up your mind about which slide looks better, and with your responses in general, that he starts asking if your parents are getting a divorce, and you say no, and he goes out and talks with them privately anyway to find out if they are getting a divorce and that’s what’s up with me (no, no they were not). It’s forgetting to put the Insulin in the fridge every 3 times you unbox the order at work. It’s TELLING yourself you are NOT GOING TO LEAVE IT OUT EVER AGAIN, and doing everything you can possibly think of to make sure you don’t forget. Bu of course you forget again, because then you answer a customer phone call and end up working on that for a while and completely forget that you were unboxing a drug shipment. Then you start on the next Mediset and work on those for a while until someone reminds me you that they are still waiting for such & such drug to be labeled. Oh yeah. It’s having an EXTREME system for filling Mediset boxes themselves, with so many double-check systems in place you take 2x as much time to fill them as your coworkers, but in the end the pharmacists don’t catch any errors on your boxes so you don’t plan on trying to speed that up (you could kill someone that way!). It’s being unable to remember a pattern for a 4-H Horse Show that all of the other kids could remember easily. It’s going off track and being disqualified but at least they let you complete what you thought might be the pattern. As an adult, it’s explaining to the Horse Play Day folks that you will need the instructions read over the loudspeaker. But it’s a Play Day so it’s granted, and you are
so happy and your horse and you go slowly through the obstacles in the correct pattern as it is read out loud to you. As a child, it’s being asked to clean your room, and moving something aside only to find another item you haven’t seen in a while, and get fascinated and distracted with that, and somehow it leads to another, and another and hours later your mom checks on your progress and you’re in the middle of a ton of really random stuff and have forgotten what you were supposed to be doing in the first place and the place is more of a mess now but that’s just how it always went. I didn’t clean my room successfully a single time until late high school. Then I did a very good job after college. It’s having your boss pull you aside out of frustration one day, as you ask for the correct Math formula for prescription again, and having her tell you point blank that she hired you because you were the only person to have ever gotten a 100% on the Math portion of the interview test. And you having to explain back that that’s because the formulas were provided and we were allowed to write down our work during the interview test. I can’t do Math in my head, and I can’t retain formulas in my head. But give them to me and some paper and will be fine! (As a side note, if you need your techs to do MENTAL Math, then THAT is obviously what you should test for in your interviews. Don’t do a switch-a-roo! I didn’t know that was one of her requirements when she hired me. Sheesh.) It’s getting overwhelmed by any task that has multiple pieces to it. It’s taking years to learn a little bit how to break down a big task into what are actually the smaller “baby steps” (thanks, “What About Bob”). It’s being able to write for endless hours as a Freewrite, but able to write only a few sentences per hour at best for a structured paper.
It’s praying in class every day that someone could just sit down next to you and watch you work because that is the only way on the planet you are going to be able to stay on the task. Day after day in class, praying and wondering and wishing that there was some way to hire someone to stand or sit next to you and just watch you work. They wouldn’t even have to say anything. It’s begging your mom to do the same but nobody has the patience to sit for hours and watch someone do homework. It’s begging your ex to do the same but he would go insane without being occupied somehow, and if the other person is playing a video game next to you, it actually doesn’t help you stay on topic.
It’s being unable to think about something that stresses you. And why does it stress you? Because there are multiple pieces to consider. So you avoid thinking about the whole thing and often forget it even exists until deadline.
It’s writing out lists upon lists after you learn about Asperger and maybe this can help you, so you write out your lists, you write out things that seem stupid to write out but honest to god are nearly impossible. Like choosing clothes for the day. Or figuring out what you are going to eat the next day. These things are virtually impossible. You have no idea. Like I said already, you try to even arrange color-coding by day of the week, but in the end, if you have more than 1 red item available, you’re still going to stand in front of your closet for 30 minutes, trying to decide which one to put on. Or maybe it’s a Monday and all of your red items are dirty. Then what? (I’m not going by color-coding right now; I didn’t bring that many different colors/items with me when I came here.)
Oh god I could go on forever but I actually have to address something I’ve been avoiding all week: I am planning to volunteer tomorrow, but I don’t know where it is located, how I am going to get there, I don’t remember when it starts (early, though), and I don’t know what I’ll wear, what food I’ll bring, how I’ll wake up in time, what to bring, or how I’ll get back. Will I need to hire Uber? Will I need to take a train? I need to go start looking these things up. Which is a learned skill I did not have until a few years ago. You cannot imagine what it was like in school years. Only my mom could tell you with some understanding. Any success I have had was due to her trying to pull me through each course, somehow, somehow. I am so not proof-reading this before publishing. I’m probably going to be somewhat embarrassed by what I’ve written tonight.
P.S. My next post will be on my reading disorder! It doesn’t affect me any more because it is an easy one to fix once I figured out what it was. Work-arounds!
ADDITIONAL(S): I have locked my keys in the car so many times, I finally bought a spiral chain that linked my keys to my purse, so I would drive with my keys in the ignition, attached to my purse. Then at least when I grabbed my purse to go into the store, I would have to take my keys along, too. | My ex and I both had executive functioning issues. We hardly managed to go anywhere together outside of the apartment, even when we had intended to, because neither of us could get a plan together. | I gave up on choosing where to sit by high school. When I’m with person/people, and they ask me where I want to sit, I look around at all of the available seats and have no clue where to start judging from, how to randomly decide upon one. Just choose, for the love of all you believe in, just choose for me. |