6 ASL Signs For Autistic Folks

Because Jess and I really need one more thing to do *sarcasm* we’re learning American Sign Language (ASL) together. When you think about it, it’s very practical. When I’m having a nonverbal moment, or hour, or day, we can communicate like usual. We also won’t know for a few years if my hearing loss will progress, so learning ASL now is ideal.

I will say right up front, that signing is definitely limited in its helpfulness, especially if you don’t know anyone else who signs. It can be helpful when it comes to emergency situations. Many paramedics, firefighters, and ER employees know some health-related signs like ‘what hurts?’ and ’emergency contact’. The most signing situation is getting friends and family involved. If the people around you know can communicate with you on a verbally challenged day (that’s what we call it anyway), it can keep everyone from getting frustrated, which means needs are met more quickly, and everyone involved feels better faster.

I’ll be linking the signs I talk about to Lifeprint.com, which is considered to be the best sign language resource on the internet.

1, ABCs– This is cheating but ABCs are the biggest bang for your ASL buck because it lets you communicate any word you want, as long as you can spell it. Fingerspelling is great in a pinch, but it gets annoying for the signer and the signee really fast. Still being able to fingerspell is always a skill worth knowing.

2. Help– This is primarily one of those ‘in case emergency’ signs. Hopefully, if you are ever in a place where you need help, a police officer, EMT, or ER nurse will recognize the sign and provide assistance. Conversely, this sign works great in letting trusted friends or family know that you need help now.

3. Autism/Autistic– Because being able to sign who you are is pretty important. That being said, the sign for autism/autistic is often problematic. There are lots of versions, and a lot of them are considered out of date or offensive. There are also a lot of regional signs for autism, so someone in Florida might no use the same sign as someone in Minnesota. In St. Louis, we sign autism/autistic using the sign for ‘spectrum’ which I love!

4. Hearing– When it comes to ASL, there are generally 3 groups of people- Deaf, hearing, and hard-of-hearing. Autistic folks who are nonverbal, people with aphasia, and people who are mute are a minority. If you’re using ASL the Deaf/hearing/hoh question will be the first one you’re asked. This is more about social rules than anything else.

5. I need– ‘Need’ shares its sign with a lot of other signs like ‘must’ and ‘should’ which makes it extra useful. Pair this sign with fingerspelling of whatever you could possibly need is a powerful communication tool to have.

6. Home signs- The same way hearing people give things nicknames, Deaf people give home signs. While it’s very bad etiquette to make up signs, giving objects that don’t have signs ‘nicknames’ to be used amongst family members is very common. For example, we use the letter ‘W’ twisting back and forth to refer to Winnie. So having home signs figured out for important things like ear defenders, stim toys, or other necessities is a smart thing to do.

There we go, the most useful signs that I’ve learned so far! I know that I meant to start learning to sign for so many years and that it took having actual hearing loss to get my butt in gear and just start learning. So hopefully if you’re anything like me, these essential signs might be the push you need to check out the resources that are out there!

 

5 Summer Reading Books

One of the great things about living in the future is that you don’t ever have to leave the house if you don’t want to. I can log my summer reading books online, and I can even report my participation in the library’s reading challenges!

(the library systems here make summer reading more interesting by giving extra prizes by doing things like reading books by authors whose race, gender, or sexual orientation is different than yours. You can also get prizes for writing book reviews and posting pictures of yourself reading on the go!)

All of this is very well-timed, because I’m currently out of school for the summer and am laid up with a foot injury, so I’ve got endless hours for reading.

People often think that Summer Reading means easy beach reads, and I don’t disagree that those are fun, but as with all of my reads, they’re kind of all other the place. So, these are my favs from summer so far, they’re all different, and all awesome in their own way.

1. Good Omens – A novel written by Neil Gaiman and Terry Pratchett could not possibly go wrong. And Amazon Prime agreed, because the miniseries of Good Omens just came out, and was a great interpretation in my opinion. It’s the end of the world. After a plan to bring the Anit-Christ to end the world goes a bit awry, the angel Aziraphale and the demon Crowly team up to stop Armageddon (mostly because they realize that they like living on earth, and Aziraphale doesn’t want to back to heaven, and Crowly definitely doesn’t want to go back to hell).  It’s easy to say that fans of the humor in Pratchett’s Discworld series will love Good Omens, and Gaiman lovers will appreciate the character design and world-building. The humor lasts through re-reads too!

2. Daisy Jones and the Six– This book is nothing but drama and I enjoyed every minute of it. It’s set in the late ’70s and follows a rock band from its rise to its crash. The story is told through interviews, done by someone who’s authoring a book, and it reads like a 300 page Rolling Stone interview. Some books told from multiple points of view can be hard to read because the characters’ voices are too similar, but Daisy Jones definitely didn’t have this problem, in fact. This is not the kind of book that I would usually pick up, but I took a gamble on it because it was getting such glowing reviews (which can bite me in the ass sometimes). This was a solid 4.5 for me, so I’m very comfortable recommending it.

3. Binti Trilogy- So some might say that this choice is cheating. “Meesh,” you say, “a trilogy is 3 books, you can’t count them as a unit!” But hear me out. Binti is a trilogy, yes, but it is a trilogy of novellas, which makes all 3 books together shorter than a lot of stand-alone books. I can always tell I’m going to enjoy a book when the opening sequence gives me goosebumps, and Binti and its sequels did. It follows a classic trope. Naive adolescent runs away from home and encounters new planets and alien species and learns about herself in the end. She eventually has to question who she is and where her place in the world is. This book is solidly written modern sci-fi, and with each book being under 200 pages, it’s a quick and satisfying read.

4. Naturally Tan– I love the new Queer Eye. I’m old enough that I remember the first Queer Eye for the Straight Guy, which was revolutionary in its time but didn’t necessarily age well. The new Fab 5 focus on self-love and become who you want to be, and it’s awesome! Tan is really open in his book about how Pakistani and Muslim culture influence who he is as a gay man and a fashion expert (he’s owned multiple clothing companies). He is also incredibly funny and very honest and has managed to curate such a positive worldview.

5. Train Go Sorry– One of my goal this year has been to read more about Deaf culture. I figure that’s only fair now that I’m hard of hearing, right? Train Go Sorry was written in the ’90s but is still one of the go-to deaf culture books. It is written by a hearing woman who grew up in a school for the deaf and follows several deaf students during their time there. There are also sections that deal with deaf culture, and with the author’s journey to become an ASL interpreter. It was a really interesting historical look at the culture at that time, and it makes me want to read some more current accounts. An interesting note- the more I learn about Deaf culture, the more similarities I see between it and Autistic culture, interesting, right?

So that’s my Summer Reading so far, is anyone else participating in their library’s program? I’d love to hear about your library’s program, especially if you’ve got good prizes!

If you’re just reading for fun, I always love to hear what you guys are reading, so let me know if you’ve read anything good lately! My Goodreads account will thank you, and I will too!

 

 

It’s The Little Things

Theory of Mind is a weird thing. A couple of years ago, I didn’t even know it was a thing at all, and now I see it everywhere. This is mostly a good thing. Pre-autism diagnosis, I was…let’s call it ‘confused’ a lot. Mostly because people kept doing things that seemed completely irrational. It surprises a lot of people, but it never even occurred to me that other people might think or feel differently than me, so that knowledge was a game-changer. Granted, it took a while to shove the idea into my brain, and more time to be comfortable with it. Even now it’s something that I have to consciously think about.

But this is not what I want to talk about today. It’s wonderful that I can see others as separate from me, but there are also major upsides to thinking that other people think like me, and it leads to me being a better person.

I believe in karma. I believe that my actions influence my future. Not in future lives, but in the here and now. I also believe in the golden rule. I have to be careful with that one though because people don’t generally like it when I treat them the way I’d like to be treated. I try and make sure to treat them the way they want to be treated.

So I try to be the best human that I can be, not just because of karma, but because while I know that I’ll probably never change the world in a big way,  I can change it in little ways every day.

The little things

  • Smiling at people
  • Treating employees like humans
  • Giving compliments freely
  • Tipping well
  • Letting cars merge ahead during rush hour
  • Putting carts back where they go

They say “the first thought that goes through your mind is what you have been conditioned to think; the one you think next defines who you are.”

Regardless of what that quote implies, I don’t think that I’ve been conditioned to be an asshole or anything like that. Far from it. What I do think is the fact that I’m autistic who’s been blessed will very poor theory of mind makes the second step easier. The ‘first thought’ is what I think, the ‘next thought’ is what others think.

And it turns out that for the most part, what I want and what other people want is pretty similar. We all want to be respected. We all want people to give us the benefit of the doubt. We all want to be treated like humans. Turns out, it’s not that complicated to be a decent human being.

I know that I’m trying my very best to make my small patch of earth a better place, and I actively choose to believe that others are too. While I’ve encountered a couple of terrible people in my life, my goal is to try to move on from those instances and remember all the good ones, because that means that regardless of the consequences, everyone is trying, and everyone benefits.

Are people innately good? I don’t think we can know. All I can do is quote Dr. Martin Luther King Jr. and say that I believe that the universe “bends toward justice”. Maybe it bends towards karma too, eh?

 

How Autism Fucked With My Mental Health

Announcement: I was in a really bad mood when I came up with this title. I’ve been turning an idea over in my head. I wanted to write about the intersection between autism and mental health and how it’s affected me personally. It sounded like a professional topic. And then I had to get pissed off and name it something petty.

Pettiness aside…

My therapist and I are taking this summer to do a bit of inventory. Basically, we’re going through each diagnosis one by one to see if we need to spend more time with anything or if certain areas need new goals. Is it exciting? No. But it’s more interesting than you’d think. It’s sort of like organizing your desk. You find cool things that you forgot you had, and it the end, the important things are much easier to find. It’s a win-win.

Imagine a 3 circle Venn diagram, with each circle labeled with one of my mental illness. It goes like this- Bipolar Disorder, OCD, and Anorexia. And at the middle of it all, Autism Spectrum Disorder.

Even thought diagnostic manuals like the DSM and ICD make it seem like each mental illness exists in its own tidy little squares, that just isn’t the case. Mental illnesses are messy and they find a way to interact with everything around them.

And all of this mingling makes diagnosing and treating mental illnesses and other disorders, developmental disabilities,  neurodivergencies, and learning disorders a complex endeavor. There are so many crossovers going on in my brain, it probably looks like a subway grid.

Autism and OCD:

Once upon a time, most psychologists and psychiatrists wouldn’t diagnose both autism and OCD in the same patient. There was considered to be too much overlap. It’s more flexible now, but when you really think about the similarities, you can almost see where they were coming from.

Autism and OCD overlap in two main ways. One, both of them are incredibly inflexible, and two, both have routines that they compulsively adhere to. Individuals with either disorder (or both) are also usually highly anxious, in a general sense and over specific situations. I have a lot of trouble knowing if I’m obsessing over something in an autism way (which my team and I agree is an okay thing) or if it’s in an OCD way (which isn’t good and generally needs intervention).

Autism and Anorexia:

An individual having autism and an eating disorder is actually quite common. A few decades ago, they would have been called ‘picky eaters’, but these days, it’s often diagnosed as Avoidant/Restrictive Food Intake Syndrome. I, however, have spent the better part of two decades with Anorexia Nervosa. It mimics autism symptoms surprisingly well though. In fact, I started on the road to an autism diagnosis because I was struggling with eating disorder recovery.

There’s an awful lot of overlap. Both disorders cause issues with rigidity (when it comes to food). Neither likes to have food routines changed and often have a short list of safe foods. And autistic meltdowns about eating or food can look almost identical to eating disorder panic attacks. Thanks to MRI studies, we even know that autistic brains look incredibly similar to those of patients with anorexia.

Autism and Bipolar Disorder: 

Out of everything we’re talking about, autism and bipolar disorder are the only things that can sometimes be considered ‘fun’. The beginnings of mania, with its extra energy and hyper creativity, is right up there with autism’s special interest joy and sensory bliss. Eventually, though, mania starts to become overstimulating and rub the autism raw. Even worse, depression can weight the autism down, forcing you into your head. The similarities are mood based and subtle, so it’s very possible for things to escalate quickly.

When we put it like that, rigidity, obsession, and control are common themes.

It’s so easy to feel like just one single thing is the complicating factor, but I’ve had enough therapy to know that it just doesn’t work that way. They say in regards to mental health that nature loads the gun and nurture pulls the trigger. I was already genetically disposed to having OCD, Bipolar, and Anorexia. On top of that, my life experiences also made me susceptible to mental illness. Add both of these things to the fact that it’s believed that autism is a genetic disorder present at birth and well, it’s hard to blame the autism for anything.

Does autism interfere sometimes with my mental health? Sure. But so do my physical disabilities like POTS, my multiple learning disabilities, and the fact that I’m Hard of Hearing.

I’m trying hard to channel the frustration that I sometimes feel into something more productive. Instead of being upset that autism, or any other of my mental crap, is quote-unquote ‘fucking up my life’, I take a good long look at whatever’s wrong and start figuring out what I can to do fix it, for me and for my communities.

Advocacy, self and otherwise, is something that I am lucky enough to be able to do. And I guess I can ‘blame’ autism for that too.

 

6 Essential Self Care Things

It seems as though I never think about doing self-care until it’s too late. Let me explain, at this point in my life I find the act of self-care pretty instinctual, and when I’m doing alright, I rarely have to think about it. It’s when my mood starts creeping downwards and my anxiety heckles raise, aka the exact time when I need self-care, I forget to do it.

Luckily, over the years I’ve developed tools, I track my moods and my self-care, I have lists of options, and I follow the buddy system and have people who can remind me to check in with myself.

I think these self-care categories are largely universal. Neurodivergent or neurotypical, people with mental health stuff and people without. Everyone will have their favorites and areas that work better for them, but all in all, I think this list offers full coverage.

1. Sensory Things– This one’s easy. I don’t know about you, but my body uses sensory devices to unconsciously soothe me. That’s a really nice way of saying that when I’m stressed out I rock. Rocking isn’t the only sensory means I use to care for myself. I like swings, I like hot hot hot showers (as long as my face doesn’t get wet). I also use stim toys like tangles and squishes and slime. My hard of hearing side as well as my autistic side both enjoy as-loud-as-it-can-go-speaker-vibrating-would-probably-cause-hearing-loss-if-I-wasn’t-half-deaf music.

These aren’t the only options though, some people like ice packs and essential oils and fish tanks and a million other things. If you use your senses to experience it, then it counts as sensory!

2. Comforting Things- This one is highly personal, but I think it’s one of the more important categories. I know when I’ve had a godawful day I want nothing more than stuff that makes me feel safe. Disney movies (Moana, Big Hero 6, and The Emperor’s New Grove to name a few), my weighted blanket, and preferably a pet (or 2!)  are my ideal combination.

Some people really like tea. Some people like rewatching all 9 seasons of The Office (or Buffy, or Scrubs). Some people like big fuzzy sweaters. Some people like going for a run. If it makes you feel good right down to your soul, then it’s likely a great candidate as a comforting thing.

3. Connection Things- Autism can make this more complicated than for your average person, but it’s still useful. Most of us aren’t overly social, even if we enjoy people. I have a great time in small groups where I know everyone well. My ultimate nightmare either a roomful of people, or talking 1 on 1 to someone don’t know. *shudder*.

There are lots of ways to feel connected if you’re willing to think out of the box. Connection can totally happen with people you meet on Tumblr or Discord or WordPress (hint hint). I love going to coffee shops to read or write because just being around other people gives me a connected feeling. So find your connection to the world and don’t let anyone tell you that it’s wrong!

4. Creative Things- Sometimes when I’m in a brain space where I need self-care, the only thing that will work is the act of creating something. I think it’s the feeling you get when you can hold something tangible in your hands that you made.

Luckily, there as many was to create as you can think of. I’m partial to things like knitting that have repetitive motions, and Sticker by Number books that have a huge creative bang for its minimal effort buck. Other mediums include Perler beads, crochet, painting, sewing, and polymer clay. You can also incorporate a Special Interest and double your self-care!

5. Movement Things- I hate admitting that movement is good for me. I’ve always hated doctors telling me I’ll feel better if I  just ‘go for a run’. Well, it’s true. Not the running part, I hate running, but finding ways to move my body that I enjoy can really help. I love riding my bike and playing with Winnie (who is still full of puppy energy). I also, despite being 31, still love to climb and jump off things.

“Good” movement is different for everyone. So walk through your neighborhood and stretch like a downward facing dog and become a ninja warrior and play a team sport. It all builds up. So jump and twirl and spin your cares away!

6. Organize Things– There is nothing more satisfying than having everything in order, and I can always tell that I’m stressed when I start making lists of things. This year during finals week I reorganized my whole to-read list on Goodreads- all 1300 books of it!

There are lots of things to organize though. Alphabetizing your books or sorting t-shirts by genre or color. You can sort Tupperwarewear or photos, plus you can make lists! Favorite movies, places you’d like to travel to, and go-to meals are just a few of them. If you need inspiration, Marie Kondo has a Netflix show called Tidying Up that’s both soothing educational.

There we go, my top 6 essential self-care categories. Think I missed something? Let me know! The more self-care options the better in my opinion!

Why Am I Here?

No seriously, do you know why I’m in the kitchen? Because I don’t.

I may joke about a lot about being old, it’s mostly a product of having spent the past few years mostly surrounded by people who are 5+ years younger than me. On one hand, this is great, I get to keep up with what’s new and popular, but on the other hand, people tend to assume that I’m about 22. It’s flattering (I think).

I know that I’ve said before that nothing makes you feel older than foot pain, and I stand behind that, but I’d like to add an addendum that says that memory loss also makes you feel infuriatingly old. No matter what my intrusive thoughts say I know that I don’t have any super weird and rare medical thing going on. My trouble remembering stuff is a combination of mental health issues and totally normal aging.

Still, I say “I don’t remember that” an awful lot these days.

I don’t remember a lot of things these days. I can’t remember if I fed the dog or not, I can’t remember what I had for lunch. I certainly can’t remember why on earth I’m in the bedroom and I can’t remember where I left my book. Actually, those last two could be related. If challenged, I can only remember what I just said about fifty percent of the time and can remember what you said even less of the time.

I had troubles galore during the FIFA Women’s World Cup remembering which countries were in which group. This would normally be something that I’d take great joy in memorizing but while was I sure that Norway had just played Nigeria, I couldn’t for the life of me remember what the other two teams were in Group A. I’m sure you’re hanging on the edges of your seats with me so I’m happy to inform you that the other two Group A teams were France and South Korea.

For me, this whole thing is more of an annoyance than anything else, but like everything else about being in a marriage, Jess is affected too, and I feel bad about that. We’re not the sort to bicker about everything but there was some general crankiness on both sides before we realized that I was missing some key memories.

So, theory time. We all know that my hearing is not great thanks to super calcified eardrums, could it be that I’m simply not hearing things? That covers some stuff, but it doesn’t explain why I forget where I’m going or what I was doing. My quality of sleep has suffered greatly with the breathing troubles, but I have doubts that sleeplessness could be that big of a factor.

I could be losing my mind. It could be alien abductions. Hypnotism is always a possibility.

No matter what, I feel like I’m going crazy, which is so frustrating because up until recently I’ve been feeling decidedly less crazy than usual. And honestly, if I was going to pick a crazy, I’d do something cool like Synesthesia, not Forgets Just Enough to Be Annoying Disorder (not a real disorder).

I suppose that until this thing sorts itself out, I can just remind myself that Neville Longbottom had a terrible memory too and he turned out pretty awesome.

 

 

5 Summer Hacks For Autistic Folks

Summer is here! The exclamation point is less about excitement and more about alarm. Don’t get me wrong, there are good things about summer, like smores and fresh berries and corn on the cob (how have I never noticed that my favorite parts of summer are food?) But at least to me, the downsides of summer outweigh the good stuff.

I’ve spent 30 summers on this earth so far, and I like to think that I’ve learned some things, especially when it comes to sensory stuff. So here it comes, the worst parts about summer and how to deal with it.

1. Sun Safety- There is a video of me dating back to about 1988 that I will never live down. I’m about 18 months old, I’m at the beach, and I’m refusing to let my mom put sunscreen on me. This is slightly funny at best until you picture a tiny Meesh rolling back and forth across the room attempting to escape the sunblock.  Luckily it is no longer 1988, and there are many more sun safety options.

As an adult, I still find sunblock on my skin to be sensory hell. I have found, however, that the spray on versions are way more tolerable. These work for me because I’m biracial and don’t burn, however, this may not be the best option for people with lighter skin. This year though I found Solar Buddies. You can fill it with your favorite sunblock, and it has a foam applicator and a roller ball for a thin but protective layer. And if sunblock is a total no-go, a good hat and a light coverup can do a lot.

2. Staying cool-  I live in Missouri, and that might not mean anything to you yet, but I have 2 words for you: 80% humidity. It is hard to keep cool for your average person, but autistic people like me need to work even harder at it. I can overheat in about 10 minutes, which is unacceptable to me when there’s so much cool stuff to do. I refuse to miss out on festivals and concerts and roller coasters just because I can’t figure out how to stay cool. My two staple things to beat the heat are fans with water misters and chill bandanas. They both involve small amounts of water, but it’s never been enough to bother me (and I’m the ruler of hates getting wet). Bringing a large umbrella for the worst of the sun work well too. Plus they come in cool prints!

3. The Pool- Ask any kid what the best part of summer is and they’ll tell you that it’s the pool! Even as a child I was confused by this. It’s not that I hated swimming, I was on the swim team for years, but what I did hate was chlorine stinging my eyes, water getting stuck in my ear, and the way the pool felt all rough on my feet. I still hate those things, but I feel like I’m better able to tolerate them now with the tools I have. Here they are- goggles (I think these seal the best), pool socks, and swimmer’s earplugs. If you really want minimal getting wet, more and more pools are putting in splash pads too. I still don’t like getting wet, but sometimes it’s necessary.

4. Clothing- I am bad at going from season to season when it comes to clothes. So bad in fact, that it was cited in the documents about my autism diagnosis. It’s just so stressful! It’s hard to tell when it’s time to switch from pants to shorts, or from tank tops to hoodies. It also doesn’t help that sometimes wearing a t-shirt is okay, except that it gets soaked at the first drop of sweat.

So here are my rules for dressing during the summer. Rule 1, try to stick to light colored clothes if you’re going to be outside a lot. It’s a little thing that really helps. I also have super lightweight vests if I need layers. Rule 2 is all about athletic wear. The moisture wicking is amazing, so it helps keep you cool, plus it keeps the gross sweatiness at bay. Lastly, rule 3 is natural fibers whenever possible. Polyester doesn’t breath the way that cotton, linen, or hemp does.

5. Hygiene- Do you know what comes along with the summer heat? Sweat. And sweat makes everything feel…honestly? gross is the best way I (a Writing Major) can describe it. The balance is so hard because there are two opposite forces pulling at you. One says that the sweat is making your skin prickle and you clothes clammy, and the other says that the last thing I want to do when I’m already hot and uncomfortable is to get in a hot shower and get my hair and my body wet, and risk getting water and soap in my eyes. Did I mention that I hate being wet? So here’s what I’ve got for you. Deodorant wipes are about the best thing ever. I like these Pacifica ones. But they make scentless ones and individual wrapped ones. Anything you could possibly want from a wipe. I also like Lush’s anti-chafing powder, mostly because you can put it anywhere you get sweaty and it will absorb the sweat and make things smooth.

So there are my summer tips in a nutshell. Summer officially starts after the 21st of June, so we’re just in time! If any of you have summer tips I will gladly take them! I’m already counting down until the coolness of Fall rolls in.

Bored Equals Crabby

Jess visibly cringes every time I utter the words “I’m bored”. I’m not positive if it’s an autism thing or not, but being bored makes me downright crabby. And if I’m suffering, everyone ends up suffering (this makes me sound evil, I promise I’m not).

I’m out of school for the summer. I didn’t end up taking summer classes because a: there weren’t any that were super useful for my graduation plan, and b: My therapist, jess, and I all agreed that I needed a mental health break. I was all set for summer, I had a ton of things I wanted to do, like ramp up my physical therapy routine, do a lot of training with the puppy, and volunteer. None of this happened. I feel like at this point there’s no point in making plans because my body will always find a way to screw things up.

Firstly, I managed to injure my foot. I cannot explain how aching feet makes me feel so old, but they do. After seeing a podiatrist I spend several weeks in a walking boot, which was surprisingly ok sensory wise. I mean, yeah it smelled a little weird and the velcro made awful noises every time I walked, but the boot put nice, snug pressure on my foot and calf, it was like it had its own little weighted blanket. Now I’ve graduated to extra supportive shoes with extra extra supportive inserts, but I’m still not allowed to walk normally. This has thrown a medium size wrench into my plans.

There is, however, an massive size monkey wrench too, and it’s called Respiratory Muscle Weakness. I mentioned a few weeks ago that earlier this year, I started to have trouble breathing when I laid down. I am not going to go through the whole ordeal again, but needless to say, I’m up to 12 vials of blood, and 11 radiological tests, and I’m not feeling any better. Being able to exist in a horizontal position is really important for things like physical therapy, and being as to sit upright at length without getting short of breath is ideal for everything else.

So here we are. My plan to stay on a schedule over the summer has been totally wrecked. My entire team and I know that routines are important to my mental health, so being organized is seriously necessary, but there’s only so much I can do.

I am willing to admit fully that when it comes to things like this, routines and plans and knowing what’s going to happen and where or why or how I totally fit the autistic stereotype. All I want to do feel surrounded by carefully planned activities and stimuli that make me feel good.

I’m in a tough spot though. My old plan was based on leaving the house every day, but that’s not really happening right now. So I’m at home. I’m reading a lot of books and getting ahead on writing articles and essays and blog posts. I’m also turning all of the D&D characters that I’ve designed into concrete ideas and  making character sheets for them. How is this useful? I’m not sure but if my current charcters ever dies, I’ll have 2 dozen others to replace him.

A query- is it harder for you all to have to change something completely, or have to change it partways? Because I’ve gotta tell you, it’s illogical, but I almost always do better if I have to say “fuck it, I’m scrapping the whole thing and figuring out something new” then if I have to collect the pieces and try to reassemble.

A real-life example here is that I’m not going to get to lift weights for my physical therapy- it’s just not going to happen. Instead i now have a pull-up bar so I can be vertical and not put pressure on my foot. It took a while to come up with something new, but it wasn’t painful, you know? The dog training on the other hand, I just can’t wrap my head around. It’s still me, it’s still Winnie, we’re still training, but we can’t follow the old plan. Not going to lie, I’m still struggling with this one.

This is just not how I expected my summer to go, and I feel kind of silly being disappointed about the whole thing. I feel like as an adult I should be able to handle change and boredom without turning into a crustacean, but here we are. I think that one of the downsides about being diagnosed with autism later in life is that I was offically ann adult for almost a decade before I found out about the autism thing. This means that I’m still learning to it’s ok for me to struggle with things and that recognizing my weaknesses and being gentle with myself is part of the package.

I’m still crabby though.

 

7 Recent Pictures and 1 Video

In the era of smartphones that have better lenses from my old Nikon, I, like many other millennials have a phone jam packed full of pictures. And for me at least, there are usually like 5 shots that are almost the same but not quite.

Since I have approximately 1200 pictures on my person at any given time, I made an effort to go in periodically and clean the copies out. In doing this I get to enjoy pictures that I’d loved but totally forgot I had.

I did this recently (and got rid of almost 300 pictures!) but I wanted to share some of my favorites, here they are, and I promise it’s not just 7 pictures of my face.

1. This was my first time wearing a suit, and I kept wavering between feeling confident and feeling like I was playing dress up. I thought this image was a great representation of how I was feeling.

2. Once a year, on the first Saturday in May, is Free Comic Book  Day. This year it coincided with Star wars Day too! It’s a tradition for Jess and I to research which comics we hope to fine, and then visit all the comic book stores near up to find them. It’s one of our favorite things to do together, and we brought home a good haul this year!

3. This is Winnie’s Puppy Kindergarten graduation picture, she almost looks proud of herself right? It’s hard to believe that she was this little, she’s 9 months old now and working toward her Canine Good Citizenship award, but she’s still got that dopey grin!

4. Can you see how soft and squish Hammy is from this picture? No matter how soft he looks, I promise he’s softer in real life. He may be the stimmiest thing I’ve ever owned, and I got him from Walgreens of all places. He’s a Squishmallow, which is a perfect name plus, look at his little face.

5. I’m the sort of person that needs to eat snacks, but I’m also the kind of person that hates snack food. Enter this blend of almonds, cashews, m&ms, and tiny pretzel balls. It’s my go-to snack for class, and also mighty photogenic if I do say so myself.

6. This probably the best Kickstarter game I ever backed, partially because it’s so pretty that they offered prints of the tiles, partially between it’s just challenging enough, partially the components are satisfying to hold, and because I can actually beat Jess sometimes (and that’s a rarity).

7. This is me and Jess, aren’t we cute? My sister-in-law got married this spring and we got to get our fancy on. This is actually the 2nd time I wore a suit, and I felt a lot more confident about it than the first time. I think it was probably the bow-tie.

8. I promised a video and here it is! It’s hard to resist a Winnie video, especially when she looks so darn happy about the whole thing. The toy is from Chuckit, she looks all of their ball toys, but this one especially! It’s getting too hot here for her to do a lot of running, so toys that keep her playing are worth their weight in gold!

5 things I learned from ACT therapy

Once upon a time, there was a human named Meesh, who didn’t know that ignoring their mental health could end in disaster. They hid their worsening issues from everyone, including themselves.

The details aren’t important, but needless to say, they ended up in a place that was so unstable, they couldn’t fix it themselves, and ended up in something called Higher Level Care, which involved spending 10 hours a day in therapy.

But the therapy wasn’t as effective as everyone hoped, and they were stumped. It was only after Meesh was diagnosed with autism that a different type of therapy was tried. That therapy was called Acceptance and Commitment Therapy (ACT), and it made a difference like no therapy before had.

I’m sure you figured out that that story was about me (given that I used my name and all). ACT was the only therapy I’ve ever really connected with, but because I’m me, I like a lot of it and hate a bit of it.

But I like enough about it to share some of what I know with you, so here we go!

1. That I have values- Acceptance and Commitment Therapy teaches that everyone has values. Whether it’s family or education, humor or empathy, we all have things that important enough to keep fighting for. This seems a little bit obvious at first. Of course, I care about things, I’m not a robot. But at least for me, learning to lean on my values when I was having a hard time with something became comforting. It gave me a clear, on paper reason to keep going. Here is an example of a values list

2. That sucky stuff is going to happen and that’s ok- Many ABC Therapies, especially Cognitive Behavioral Therapy (CBT) drive me nuts. They are all about changing the way your brain thinks. I don’t know about you, but I’ve spent my whole life trying to do that, and it’s never worked. ACT teaches the opposite, in that you can’t always control what your brain does, but you can be prepared for it, so it’s less scary and overwhelming. I’ve always felt like this is a more realistic point of view.

3. How to make a good plan- Another tool that ACT gives you is the ability to make a plan for when things go bad. It figures, if you have a plan full of positive coping skills sitting in front of you, you’ll be less likely to use the negative coping skills. This had a surprising effect on the rest of my life as well. Executive Dysfunction shows its head for me in the inability to plan efficiently or make lists. Having someone who was trained to teach these things and go over it step by step with me (multiple times) made me significantly better at it.

4. That I hate visualization– “Imagine you are on a beach”, “Picture your thoughts floating down a river”, “Visualize your life in 5 years”. Instructions like this are my nemesis because I can’t actually make pictures in my brain. If I close my eyes and tell myself that I’m on a beach, I can imagine the smell of salt, I can imagine the sounds of the waves, but I can’t picture anything but a blank wall. It’s frustrating, especially when you’re being asked to do it multiple times a day. I’m telling you this because in any therapy there will be stuff that doesn’t work for you, and this doesn’t mean that the therapy isn’t a good fit. It’s perfectly valid to use the parts that work, and leave the ones that don’t work behind.

5. Grounding is stim-friendly- Grounding is awesome. It is using your senses to help keep you in the present, and to help you calm yourself. It is made for us autistic folks. To ground, I use weighted blankets, essential oil rollers, sour candies, sensory toys like putty and beads, and I play counting games with myself. Grounding works differently for everyone. I’ve met people who like to color, people who like to talk to friends, people who like to put smelly lotion on their hands. It doesn’t really matter what you do, as long as keeps anxiety or meltdowns or dissociative episodes from escalating. Grounding isn’t necessarily unique to ACT. CBT and especially DBT use it too. Here’s a list of grounding suggestions 

When I talk about stuff like this, I’m never trying to sell you on anything, I just figure if I which I’d known about something sooner, someone else might too.

As always, friend, I wish upon all of you good mental health and lots of self-care!