Lists and doing them sadly

[Content: Mentions of Depression, of Partial Hospitalization programs, and of the feelings/enjoyment/good at charts?]

One of the exercises I learned as a kid about depression involved making a list of the Things I Enjoy Doing. There was also the Things I Am Good At list, and the These Faces on the Chart Match My Feelings Today list. There were lots of other ones, but I’ll stick to these ones because they are the Alternative Coping Mechanism lists.

When I was in a partial program, the day would begin with listing the feelings off the chart of faces on the wall, and this would happen at several points during the day- usually at any transition. Part of it was to track our self assessment, but it was also supposed to help us identify our feelings more accurately, and learn what the facial expressions were for them. If someone showed an emotion “wrong” the teachers would demonstrate “appropriate” ways of showing emotions. If someone chose emotions that flagged their depression screens, we’d have to add an extra thing to the “Things I Am Good At” list. I’ve also seen it listed as a “Strengths” list. Every day, we’d have to come up with 3 things we were good at. It was passable to repeat the same things most days (which I did- I did the same for the face charts most days) though coming up with new ones was a “good sign.”

If I remember correctly, my charts usually looked something like this:

Mood: Apathetic/Ambivalent

Savannah is good at:

• Animals
• Reading 
• Art

I seem to remember a lot of “Ambivalent” on my sheets after a staffer explained what it meant. And I could list off those “Strengths” half asleep by the end of  my time in the partial program.

A lot of time was spent on the identification of “appropriate coping skills.” We had lots of sheets and stories on the differences between passive, assertive, and aggressive responses to things, but like several of the kids in the program I found practicing them difficult- I could repeat line by line the “assertive” response I was taught at home, but if it was my mom’s second husband this was a “behavior” and “manipulative,” so what was the point?

The other was the “Things You Enjoy List.” It was basically supposed to be a list of things you liked doing so that if you began to slip into a depressive episode then you could look at the list and do one of the things to remind you of good feelings- or at least put off the omni-present gloom of a depressive episode for a little while. At the time, my list was essentially as follows:

Savannah Enjoys:

• Playing with animals
• working with animals
• reading
• doing art

Seeing as how this is basically a re-wording of my “strengths” list, I think that I had quite a few frustrated staff trying to figure things out. I had a dog, maybe more, at home at the time (my pet timeline and my treatment timeline aren’t ones I have attached to each other to be sure,) and I sometimes would volunteer with the support of my Theraputic Staff Support at a local hab aide riding facility. (Though I think that might have been after the partial program…) Since they were trying to teach me social stuff too, having me go read to myself in the corner wasn’t exactly feeding into the treatment goals that had been developed, and there’s only so many times I go from group art session into hyper focusing on my own project to completely miss the group part before they throw their hands up in the air.

The one exception was in the summer when an additional word was added: “swimming.” We would “field trip” once a week if we were there during summer sessions, and usually it would be to the pool. While there was some supervision, it wasn’t close enough to tell the difference between playing with other kids and playing in the midst of other kids in the pool. I lined up in lines to jump into the deep end more because of knowing that if I didn’t the life guard wouldn’t let me jump in at all. But as the pavement left my feet and I plunged into the pool, it was heavenly.

I get why they made us do these lists. One of the things that always ends up on the “things to help with your depression!” lists is “do something you love/a hobby.” And it’s good advice- unless your depression manifests itself by making even things you love unappealing. You know that you really enjoy super heroes, or crime shows, whatever, but when you scroll past them on Netflix or Hulu none of them seem interesting, nothing appealing. You got a whole big stack of Forensic Anth style Crime novels, but starting that first book seems … unsatisfying. You have a massive knitting project that you loved when you started, but you went on hiatus and now that it’s been a while you can’t remember why you enjoyed it.

At least, that’s what it’s been like for me for a while. It’s pretty much horrible- I love being able to invest myself in something I love, completely zone into it for hours and hours on end. I like to hyper focus, to learn a ton of facts that only seem important to me, to have access to knowing everything about such and such a thing, to watch every episode, read every book, listen to every song in a completest fashion. And a lot of times when I’m depressed, it robs me of that. I can’t even get started on binge reading the Tudor book I picked up a few months ago and was so excited about.

For a while, I was working on this by baking once a week regardless of if I felt up to it or not. This worked best with cookies- They are pretty basic to make, but you can also make them as complex as you like. I’m a pretty good baker according to the people I feed, and when I complete something there’s a tiny pop of having completed something- almost like the feeling of gaining experience points in an RPG.

So I know that actually following through can help stymie a depression spiral. The problem is actually following through on doing things. And when impaired Executive Functioning mixes in, identifying those things in the moment is just that much more difficult.

So I’m going to do a bit of a sad list here of things I know I enjoy, but which I might forget about. I want to take this idea that was used a little awkwardly for me in a treatment setting, and rebrand it as my own and as an assistive tech of sorts. If you are reading this and want to join me, feel free to do so whatever way feels worthwhile for you.

This is about helping you. It isn’t about making others feel better about your depression/anxiety/etc. It’s about having a tool to help yourself. The things you write down only has to be things you enjoy, and as long as it isn’t harming others it doesn’t matter what it is. If it’s flapping and rocking for hours, that’s fine. If it’s meowing in your room, that’s cool. This is about you and what might make you feel good, not any one else. Yes, you may want to have a safe, private area to do them (you don’t want to harm people or subject yourself to undue risk/the law) but they are still for you. You can do them in whatever tense you like. I’m doing third person partially because of familiarity, and partially because I want to break off the connection between writing about my care plans in third person and leaving them in the control of service providers and staff who might or might not have my best interest at heart.

Things that Savannah remembers enjoying that she might forget:

• Baking things. Savannah likes baking things. Cookies are easy.
• Cooking for other people. This sadly requires other people, as cooking for herself is a different set of brain ordering and decision making, so Savannah rarely makes complex dishes just for herself.
• Going to the coffee shop to write. Savannah likes the coffee shop and the people there, and even though Savannah is nervous about actually interacting with people who aren’t on her “safe” list outside of advocacy contexts she does like being around people in small to moderate amounts when non-scripted interaction isn’t needed. 
• Writing. Savannah likes writing, but she can’t get started much of the time because of her Executive Functioning issues and/or self-consciousness. 
• Savannah likes throwing things when she is frustrated. Savannah has soft things that she can throw in a room safely, so that she doesn’t harm people or objects in doing this when she feels she needs it. 
• Savannah likes Earl Grey Tea, especially in the Star Trek Mug. The steps in making EGT are: 1) get out cup 2) get out tea bag 3) put tea bag in cup 4) put water in electric kettle 5) turn kettle on 6) wait 7) electric kettle clicks off 8) Savannah pours water over tea bag 9) tea steeps 10) add a little almond milk 11) drink tea. 
• Crime novels. Savannah can either read them or listen to them on audio book from the library. Savannah has a big stack of Patricia Cornwell books to read. 
• Sci-fi and fantasy stories. Savannah likes sci-fi and fantasy. Even though she is tired when the TOR.com newsletter comes, she should try to remember how much she enjoys the short stories in there. 
• Savannah likes vocalizing. This is not the same as talking, but can including singing. Meowing, purring, beeping, meeping, and screaming all are examples of vocalizations that make Savannah feel better. (The screaming is better for up at Her mom’s house in the woods though.)
• Savannah likes the recumbent bike. It doesn’t put stress on the joints the way that other equipment does. But Savannah both has difficulty getting to it, and has a hard time seeing it as a priority. She also needs to be careful not to over do it, especially when she has stuff to do the next day.
• Savannah likes certain TV shows. This includes, but is not limited, to: Doctor Who; Law & Order (various incarnations); Criminal Minds; CSI (NY or Original); Bones; Agents of Shield; Sleepy Hallow; Project Runway; Castle; Eureka; Warehouse 13; Numerous genre stuff that the BBC puts out; regency-ish period dramas; American Pickers; Oddities; and so on. 
• Savannah has a lot of youtube channels she watches. She does like the science ones a lot, but she needs to remember that she also likes the non-science ones she’s subscribed to, so maybe she should watch some of those beyond vlogbrothers and weezywaiter. There’s nothing wring with liking the science channels, but Savannah is often pleasantly surprised when she follows through watching the other channels too. 
• Savannah likes genre movies. She often forgets about watching them because they seem like more energy than they really are. It is okay is Savannah doesn’t remember what the movie was about later, too. It’s okay to turn it off half way through if Savannah decides it’s actually bad and it’s not about trying to watch it like normal people. It’s ok to get distracted and wander off while the movie is running. 
• Remember: Savannah particularly likes watching Super Hero Movies, Period Dramas, and The Decoy Bride. It’s okay for Savannah to watch Captain America or any movie as many times as she likes as long as she gets her work done and she falls asleep before sunrise. 

Okay, that’s my attempt at an undated and more useful to me list. What does yours look like?

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Today and Yesterday (This is Autism)

Today, Monday November 18th is the “This is Autism” flash blog. From the official website for the This is Autism Flashblog on Monday, Nov. 18, 2013:

Tell us what “This is Autism” means to you. You can write a paragraph or a blog post, contribute a poem or a video, make a comic or a graphic. Use your imagination. Let’s tell the world what autism is in the words and works of autistic people and those who love and support them.

I personally have a hard time writing for flash blogs- the timeline means I inevitably feel like what I can churn out in the time span isn’t polished enough, or put in order enough. Sometimes I just end up spitting something out (like today) and moving on, but more often I sadly watch the time span of the flash drift by while I grope about the time soup for words. While it’s true that some days something clicks and the words come out fitting together like some sort of expert Tetris player is winning a tournament in my head, most of the time spitting out the “articulate” is a long, time and energy consuming process. On the worst days, it’s like putting together a blank jig saw with relatively uniform pieces. It can be done, but it’s time consuming and when a deadline is added the soothing rhythm of the process is lost.

Time soup is probably the best description of how I experience time- I know it’s swirling by, but unless I have anchor points the rate or even the order I’ve past the memory ingredients is a bit fuzzy. In high school, I collected wall calendars. When asked to draw a dream art studio in art class, there was a wall filled with calendars hanging in rows. Having that reminder that there’s meaning to that chaos was helpful. Now, though, I don’t have any wall calendars. I don’t even have a (functioning) wall clock. Though there’s an antique clock on my mantle, I often forget to wind it as it has a function of reminding me of the past, of history, rather than of actually telling me where I am in my own story.

Instead I remember things by attaching them to documentable events, ones that I can either do math for (I graduated HS in 2006, so since x happened in 9th grade and it was spring, it was 2003.) or that I can research (We saw Titanic in the theater the week grandpa Logsdon was buried, but it was after the new year, so he died in 1998 since Titanic came out 19th December 1997.) I can’t always locate my memories within the timeline in a timely fashion, so I look for another memory that I can locate in a hurry. But there are some things, some events, some orders that I can remember that have very little actual use.

While I’m physically capable of numerous things self care wise (though as my physical health alters, that number fluctuates) my difficulties with time mean that I can’t identify if it’s time for y task to happen. I also will look at a room, and be unable to identify what task comes next out of this larger picture of this room needs cleaned. Unlike words, visually ordering jigsaws or physical objects doesn’t translate to real world situations. The process of planning out all the steps and then motor planning those steps enough to put into action just aren’t able to set- a bit like jello that refuses to set before you need to leave. Sometimes it works enough to get something done, but more often I end up with a sad, soupy mess.

But this is why I get help- my sister is being paid to clean my house; someone in an office somewhere schedules my transportation and hotel for an event; a friend walks with me after a hard day so that I don’t forget my purpose, or so that I don’t forget that there’s a purpose to the lit up man on the sign across the street. It is why I can see the networks of people I’m building up around me, crystallizes relationship webs- like frost making them visible in the early morning. It reminds me of the last time my best friend called me to work out a problem of his, the last time I texted him because I couldn’t figure out my emotions and it helped.

I might not know how long ago it was, but I can build off of the memory of brushing someone’s hair, the beautiful meditative process of granting that tiny help in the eye of executive chaos. It reminds me, too, of another friend’s iron revealing imagined patterns as I ironed on office carpets, and of that friend and I sharing a moment full of leaves granting peace as time hurtled forward. Or of writing back and forth with a parent, using the well of my memories to help improve their child’s life. Of exchanging the same words over and over, back and forth in an echolalic loop that bubbles up with meaning that we don’t explicitly voice- relationship. Of sharing a moment where words are meaningless, and in behavior dwells our meaning.

Of community, built together in ways that without connections able to be built alike we wouldn’t have access to. Of community that we own, rather than attempting to purchase access to through the blood and tears of normalization. Of community that doesn’t demand indistinguishability- just acceptance. Of community, that feels the same stings and can sometimes come together in many bits and pieces to make a bigger response than any one behavior alone.

This may be relatively stream of consciousness, and it certainly didn’t go where I thought it would, but it came to a valid point- that the community we form when we accept our autistic selves, when we value the autistic selves of each other, is one of the most powerful forces of autism. It is building, not destruction, defining our autism. And together it makes us powerful.

 

The official logo of the “This is Autism” flash blog.

Impact

[Content: mentions of murder, attempted murder, and ableism; internalized ableism; suicidal ideation]

This is a difficult post to write. It’s always difficult, of course, to touch on the subjects of murder and ableism, and on how they are excused. It’s more difficult to talk about the impacts in personal ways, ways that are your own lived responses and realities, rather than as abstracts. There’s a distance to the abstracts that keep you feeling safe, even though you know you aren’t. And this doesn’t even account for the risks that writing about those impacts can have on you personally. It is, plainly, all around difficult.

As a child and teen, I mainly just shrugged off these representations as I heard them. They may not have been as prevalent in the media I consumed, but they were, as they are today, “normal” things to hear. But just because something is de rigor doesn’t mean they are truly forgotten at all, even when they hold no special importance in the moment. Those words and memories are still in there, waiting for another train of thought to hook into them and pull them to the surface. It might be later that day or a decade away, but when you fish for something to carry you out of distress, sometimes you hook a poisonous fish instead.

A couple of months ago, I had a melt down that morphed quickly into a break down. I had spent the day cleaning and babysitting. I did have my mother around to help, which is why I was able to overcome my initiation problems, but this is still a major energy expenditure. By the time we got to the laundromat, my spoons were spent with several hours still left to go.  So when my niece put laundry in the wrong machine I snapped out “What are you doing” instead of a “That’s the wrong dryer honey.” She cried, and my mother responded with a “She’s still 4, you can’t expect her to know what to do.” And at that point the last spoons that I use to guard my thoughts was gone. I couldn’t stop crying, or saying horrible things about myself.

Instead of falling on the ground in a ball, as I sometimes do when I have a meltdown from spoon loss, I tried to latch on to something mentally to restrain myself from melting into a quivering mass on the floor in public. I needed to finish there instead of going home to melt in private, both because it’s less private there on cleaning days and because I didn’t have any more clean clothes. That was not a good situation, and pushed beyond the point that I could handle all I could reach were the “poisonous fish” in my attempts to keep afloat.

Aloud, I said things and used words about myself that I would never say in a normal state. I’ve reformatted my language so I don’t use the R-word, yet here I was calling myself one aloud in public. There was no filter left through which to moderate my speech, let alone my thoughts. As things escalated, the thoughts got worse even when the words got less specific. In that state, with nothing left to hold off the combination of anxiety and traumatic memory, my thoughts started regurgitating things I’ve heard in Tetris like reconfigurations.

Why didn’t they kill me when I was a kid and they could have some sympathy for it? Why would they keep such and expensive burden?  Why am I still alive?*

It’s a horrible set of thoughts to have. It isn’t about the sort of person my mother is- my mother is wonderful and doesn’t really understand how someone could intentionally kill their child with or without disabilities, and doesn’t even get why anyone was okay with the “I am Adam Lanza’s Mother” post. As much as much of my sense of worthlessness when I’m at a bad spot are an effect of the first two men she married, where my thoughts ended up going weren’t, as far as I can recall, a direct reference to my past.

It is, however, an internalization of the messages, responses, and dehumanization within our media. It’s every time a parent acts like having homicidal fantasies, masked in “mercy” language or not, about their disabled kid is “normal” or “natural,” every time telling them it isn’t is met with “you don’t know what it’s like.” It’s certain groups of people deciding it’s okay to lay blame at the hands of autistic adults for not giving up everything to put themselves between an autistic child and their would be/actual murderer- even when we’ve provided resources for those who are willing to listen. It’s every time the media calls reporting sympathy for the murder of the disabled making things “fair and balanced.”

These things are pervasive. And when something is culturally pervasive, it does become internalized. Even when you are someone that actively fights for cultural change, someone who can, if only in text, tell you exactly why and how oppressive structures damage people in our society. Even when you are someone who knows that the diversity of disability is evidence of humanity’s strength as a species.

If you think that these murders, or the way that our media talks about them, makes sense then I’m sorry- you are, as Beth said in her recent post, already at rock bottom. All I’m asking is that you don’t drag me and other people with disabilities down with you.

____

* Please don’t worry. I have support networks in place, I’m not actually in danger of attempting anything. I shouldn’t have to say this, but trust me I have family that will help me if I actually am at the point of needing to decide if the hospital is the right choice. And no, right now it is not. Thank you. 

I started this back in September(the “A Couple of months ago” was initially “a couple of days ago”), but it took me until today to feel like I had finished it. Originally I was going to link to writings on how media portrayals of this type of violence impacts how other people treat us, but was unable to work through it. Feel free to share links on the subject below.