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My Weekend Brought to You by Team Ayu and the Supernatural Family

Current Mood:tired emoticon tired

Current Music: “Out of Control” by 浜崎あゆみ

I had a rare day of mental clarity and reduced pain yesterday, and, of course, I behaved as if everything was so perfectly normal because I felt so much better and overdid it running around doing ALL THE THINGS. It was my husband’s birthday, so I made cupcakes so we could celebrate with the kids in between finishing up some school assignments while my brain was in the right space to do so, then we got dressed up a bit and headed out for a dinner cruise he had surprised me with a reservation to a few weeks ago. It was a lovely, relaxing time, but once we were back in the car headed home, the familiar ache began to take hold in my hips, legs, and feet. What I’d give for one day doing remotely typical tasks without ending up in pain for it. I’m paying for it with mental exhaustion today more than with pain (back to it’s usual, constant baseline but not worsened as it can be after overdoing it on a good day), thankfully, but it’s still not loads of fun to deal with. I feel like I could sleep for the rest of the day, though I won’t, obviously, with children to homeschool and whatnot.

I’ve been trying to cheer myself up a bit by doing things related to special interests that had taken a bit of back seat in my efforts to fit in and be normal as an adult and mother. This is just the latest step in my journey of discovering the things I’ve done, or stopped doing, because of being autistic and how society, therefore, reacted to me before I was diagnosed. Ayumi Hamasaki (浜崎あゆみ) has been one of my favorite musical artists since high school, and this weekend I finally joined her official international fan club Team Ayu so I can get news on concerts and releases a little earlier and just enjoy having an opportunity to win things on her website and the access to her blog she keeps for the club. It seems such a silly thing for me to do, something I would’ve done as a teenager had the international option been a thing at the time, but it brings me so much joy just being a part of it. I even discovered that she will be performing in Okinawa next fall! I’m hoping to luck out and get tickets through the fan club when they go on sale. That would bring my grand total of Ayu concerts to two, which is more than I ever thought I’d be able to do as an American fan. Fingers crossed it works out for me to attend because it would be amazing to see her perform again and take Anya with me this time to experience it since she was too young to go along during the 2014 tour when I saw the 15th-anniversary show in Hiroshima. It would definitely give me something to look forward to when I’m having a bad health day and hating everything else about being stuck here on this island unable to do anything about my medical predicament.

I also splurged a little and did some shopping online at Hot Topic. (Good Lord, have I time-traveled back to my 15-year-old self this weekend, or what?) As Supernatural is going into its final season, they partnered with the retailer to produce a limited time t-shirt design to be sold for proceeds toward hurricane relief. It coincides with the official fandom holiday Supernatural Day, September 13th – the day the first episode ever aired. I never get to do any of this kind of stuff either because of time or money or because I believed society telling me it’s not a productive use of my time and energy. It feels so good to just not care about that anymore and embrace what I love! I’m so excited to get this shirt when it arrives because it’s a little piece of participating in the fandom lovingly dubbed the Supernatural family in real-time, as things were happening, instead of just watching from the sidelines, as I have for so many years, afraid to get as into it as I really wanted to because it would’ve been viewed as childish or useless. While I was already there doing some digital shopping, I decided on an impulse to get a dress that mimics the one Ariel wears during her time exploring the kingdom with Prince Eric in Disney’s The Little Mermaid and some glitzy Sailor Moon hair pins. It’s going feel like Christmas in the mail the day this all arrives.

I never do this stuff for myself, just for the kids, as we mothers are inclined to do. Don’t worry, my kids are still spoiled rotten with the things they love and time with me, but I’m not letting my own needs take a backseat to the point of neglect anymore. It’s a freeing feeling to be completely myself, regardless of what anyone else thinks, and my kids benefit from how much happier I am – they’re even getting into some of my interests with me! Anya has loved bonding with me over Sailor Moon binge sessions and old Disney Channel movies in recent months. Do the things you love, ya’ll! And don’t let anyone make you feel silly for it. I never will again.

To Be or Not to Be

Current Mood:anxious emoticon anxious

Current Music: Wake me up by 浜崎あゆみ

Despite the brain fog and chronic pain, I’ve been muddling my way through my grad school courses over the last few months. It’s getting more and more difficult to process the information and produce coherent assignments, which is all the more frightening because typically these things come so very easily to me. It’s like my brain doesn’t even work the same anymore. I’m in the middle of the fifth of twelve classes I have to take to complete the program. It’s a poetry course, and, thankfully, since I can write from a place of emotion and get a little more leeway on technique and academic work, I’ve been able to keep pushing forward. Even so, I lose points in places I don’t think I will, in places I never would have in the past.

I’m extremely nervous about moving into the next class in October. It’s a Shakespeare course, which normally I love so much and was so excited about registering for, but I already know that the materials will require a lot of the brain function I feel I have lost. I don’t know how I’m going to maintain the work required for analytical papers when I’m struggling to pen 10-line poems that meet course criteria now. I’m sure I can complete the classes, even if it means not getting a 4.0 GPA, but for me, the perfectionist and over-achiever, getting anything short of an A in the course is anxiety-inducing and causes me to feel like a failure, if for no other reason than knowing I’m normally capable of it without any worry at all, and it’s taking me days to accomplish what used to take minutes or at the most hours and yield better results. It feels like losing another piece of myself to whatever this is.

I can apply for disability accomodations through the university, but I don’t even know what to ask for. The paperwork requires a bunch of information from my doctors, who obviously are less than helpful already and weren’t the ones to diagnose me with Asperger’s, which is the route I would have to go in order to get the accommodations, even though it’s the mystery chronic illness that is causing me such difficulty. If I take a break now, not only am I unsure of the financial ramifications since I’m using loans to pay for this degree, but I’m also afraid that I won’t make it back if this condition continues to deteriorate my abilities.

As frustrating as it has been to be less physically capable because of how I feel, the loss of mental capacity is much more terrifying. My intellect has been such a large part of what makes me…me. Who am I if it is gone?

Heavy Thoughts from a Rough Morning

Current Mood:exhausted emoticon exhausted

Current Music: “Survivor” by 浜崎あゆみ

It feels so weird and yet so right to be blogging in a diary/journal format again. I held back from posting yesterday, still in the habit of posting snippets on Facebook instead. I’d really like to move away from that some, I think. Social media feels so fake and contrite these days. I’ll obviously still use it, posting Instagram photos and sharing memes and infographics; it’s what I do. But I’m glad to have a little extra space to sort my thoughts and type them out into the abyss, whether anyone else reads much of it or not.

I’m struggling a bit today. Whatever mysterious chronic malady plagues me is seriously affecting my day-to-day ability to function, some days worse than others. Today is one of the worse days. I woke up and had to stay in bed for about an hour, which has become pretty normal, but today my limbs felt especially achy and heavy. My head felt even foggier and groggier than typical; I ended up falling back asleep for a bit which is unusual for me. I’m finally able to get up and move around now, ignoring the constant pain in my arms, legs, hands, feet, hips, and back…basically my entire body. The brain fog is killing me, though. I made it through some reading with the kiddos, enough that they could move on to either playing or their independent work, depending on the kid. I have to rally at some point to make it through my own homework, as I have an assignment due this evening.

It’s really discouraging to know my options for getting medical help may be next to nothing. Right now, they just want me to take an SSRI (fluoxetine/Prozac) and wait for the referral to go through to see a mental health counselor on base. It’s pretty clear to me that they think my illness stems from anxiety and depression, rather than the other way around. Ironically, before my health started to degrade, I was in the best place mental health-wise that I’ve ever been in in my life – since I became a teenager, at the very least. I was feeling so sure of myself and ready to actually live instead of constantly worrying about society’s expectations or continuing to make myself small to please others. It was amazing. The physical problems took me by surprise and began to worsen exponentially about 6 months ago; I rarely have days where I feel remotely decent now. I’m always run down, in pain, and having trouble processing information that once came to me as easily as breathing. It’s infuriating that I’m being brushed off by the medical staff here, and it’s terrifying to feel like there is absolutely nothing I can do to stop the decline in my mental and physical abilities. We are not scheduled to move again for another year and a half, at least. I don’t know how I’m going to make it that long.

I’m afraid to even message my doctors and confess that I haven’t been taking the meds. (I insisted I wanted to be seeing a therapist first, but somehow they took that to mean I was cool with meds as long as I did eventually also see a counselor. By the end of that appointment, I was so beaten down and upset I couldn’t fight for myself anymore. I just nodded, smiled, and took the prescription home.) There are so many tests that haven’t been run that would make sense to try with my symptoms, but every time I go in suggesting something I feel like it just feeds their theories that I’m a hypochondriac. It’s a very trapped feeling to not be able to take control of my own health because doing so immediately makes doctors assume I am not actually in control of my faculties. This system is so horribly flawed, don’t even get me started. I’ve lost faith that I’ll ever get help, especially out here, and I’m worried about what that could mean. Suffering for at least the next couple of years. Worsening symptoms to the point of permanent damage. Or worse. I really just don’t know what to do, and it feels like there is absolutely nothing I can do. That’s where the anxiety is coming from; that’s why I’m getting depressed. Because they won’t actually help me. They can’t be bothered.

1 in 4

I should have had a baby this week. Our family should’ve grown by one to reach a grand total of six. I should’ve been watching Anya and Marie fawning over a new brother or sister, while Benjamin’s adorable fascination with babies overwhelmed us all with an overload of cute. He would be the sweetest, gentlest of big brothers. And I hope someday he gets to be one; but, unfortunately, that day isn’t today.

Today, I’m grieving the loss of a child I never held or named. One that existed only for a moment in my mind’s eye. The pregnancy was unplanned, but I fell in love the second that pink line appeared. I wasn’t ready for another baby, it’s true…but during the twelve or so hours between that positive test and the first signs of miscarriage, I convinced myself otherwise. I got excited. I daydreamed. I hoped. And then, as quickly as it arrived, that hope vanished.

I spent several weeks in a pretty dark depression, one I posted about online here and there without revealing the reason. I wasn’t ready to share just yet. I usually share everything, but this was my first loss. Every other pregnancy has ended in a beautiful baby placed in my arms and sent home with me to grow into the three amazing children that we already have. I never once for a moment believed that this one would be any different…until it was. It happened in November, just before the Holidays, which I’m sure didn’t help matters.

It still feels surreal that I was pregnant at all, while at the same time it seems impossible that the pregnancy was so short-lived. The kids don’t know; it wouldn’t be right to tell them and put them through this grief, so as parents we are mourning alone. There aren’t any more babies in the cards for us right now; the housing situation and lackluster medical care options available to us here in Okinawa just aren’t something I want to deal with through another pregnancy. My last overseas birth resulted in an intense postpartum depression that kickstarted years of autistic burnout from which I’m still not entirely recovered. My health is an issue, too, and I need to figure out what is going on there before I add anything else to the mix.

But, logic doesn’t sway the longing I feel for another baby or the intense reaction to the loss of this child we weren’t expecting. The kids are always asking when they will get another sibling; they have baby fever worse than I do, it seems. It fills me with joy to know that the love they have for one another is so strong and sure, that the idea of adding another member to their bond is a given to them. There is no fear or jealousy, just…love. And a desire to nurture and care for one another that seems innate to their precious little personalities. Knowing how much it would add to their lives for this child to have become reality makes it that much more difficult for me to process and bear.

I know it’s not the thing I should want right now; that it makes absolutely no sense to even consider it until I am healthier and preferably when we are no longer stationed overseas. I think it scares me a bit to know I’ll be in my mid-30’s by then, and considering the alphabet soup of diagnoses already present in our family that rolling those dice becomes exponentially riskier by then. It makes me feel like a clock is ticking, but life circumstances dictate that I must wait and potentially miss the opportunity to have another child entirely.

I try to convince myself to be content. I have three amazing kids; I need to be okay with this being it for me. They need to be enough. And they are. I had already accepted that three might be all we can handle for a multitude of reasons…but then that test turned positive, and it just completely wrecked all of the delicate scaffolding built through the mental gymnastics of putting the tangible realities ahead of my emotional desires.

I’ve been slowly rebuilding it, knowing that the best thing I can do is concentrate on myself and providing the best possible childhood for Anya, Marie, and Benjamin right now. They are here and need their mother; that keeps me going. I know I am blessed to have never experienced the loss of a pregnancy before now. I know the statistics. But that doesn’t dull the pain of knowing what could have been.

Adulting Through Autistic Burnout

Autistic Burnout: Identifying and Coping with it as an Autistic Adult
Okay, so everyone gets tired and overwhelmed sometimes, right? We find ourselves overburdened by the most typical of tasks, adding up over time and combining with the unexpected to thwart the best laid plans. I can’t really speak for anyone else dealing with the spinning of plates necessary as a wife and mother in today’s society, but I would assume I don’t have a monopoly on exhaustion based on my Facebook newsfeed. Even so, I have the added bonus of dealing with something called Autistic Burnout. The symptoms often mimic or coincide with depression. There have been several great articles written on the subject by other adults on the spectrum, but I personally experience these symptoms when in a period of Burnout.

  • Heightened anxiety
  • Feeling more and more lethargic
  • Increased sensitivity to sensory triggers
  • Panic and meltdowns over the smallest mishap
  • Withdrawing verbally and emotionally from social relationships
  • Shutting down completely for periods of time, desiring only to sleep and exist
  • Inability to regulate emotions and crying easily and frequently
  • Forgetfulness and brain fog due to a slowdown in thought processes
  • Decreased motivation and difficulty getting your body or mind to do anything
  • Feeling overwhelmed and extremely guilty for not keeping up with things
  • Drastically worsened Executive Dysfunction

How does it happen? Well, typically it comes after extended periods of time wherein I push myself too hard to constantly achieve a level of productivity that isn’t sustainable while also masking in social situations without taking any time for self care to recharge and process. Basically I try to force myself into the proverbial round neurotypical hole as a square Autistic peg, genetics and psychology be darned. Spoiler alert: reality doesn’t care about my delusions of grandeur.

Burnout can last for days, months, or years. Looking back over my childhood through adolescence and early adulthood, I realize there were several times I remained home from school or work literally sick from exhaustion. An overachiever by nature, I would go and go until there was nothing left to give, and then I would collapse into sleep for anywhere from one day to several until I felt decent enough to get back up and out there accomplishing the things that needed doing.

A little over four years ago, I hit a major brick wall of Burnout after the birth of my middle child. It was triggered by an episode of Postpartum Depression (Or maybe the other way around? Chicken? Egg? Does it even matter?! I dunno. And I digress.) that just would not quit. Around the time my daughter turned one, we moved back to the United States from our duty station in Japan, a place I loved and did not want to leave. I powered through the overseas move, a surprise third pregnancy, and the ridiculous hours and emotional strain of my husband’s temporary job as a recruiter in our new location. Then my daughters were diagnosed with Celiac Disease, and the days of grabbing takeout or frozen dinners to get by were over; they were replaced with the need to cook mostly from scratch for all of their meals to avoid contamination and get their systems clean. With every passing day, my symptoms grew worse and worse.

Two years ago, in the midst of all this, I realized I was on the path to a shutdown of epic proportions. My eldest daughter’s homeschooling was falling miserably behind while I cared less and less about managing the household needs. I was afraid the day would come when I wouldn’t even get out of bed to feed my crying infant son, and with my husband’s work demands, there’d be no one to care for the three children depending on me to survive. I ended up in my psychologist’s office being officially diagnosed with Asperger’s Syndrome and required to attend therapy sessions twice a week to stop the emotional hemorrhaging until I could breathe and get my bearings.

I did a lot of work in those sessions, which continued into once a week appointments over the course of that first year. With a lot of introspection, realizations, and acquiring of tools needed to manage a home and family with my unique circumstances, I eventually reached a level of mental health never before achieved in my life. I came out the other side stronger, wiser, and aware of my needs as an Autistic woman. But guess what? The Burnout still isn’t completely over. I’m still pulling myself out of that hole, one step at a time, being careful not to do anything that might send me flailing back into the worst of it.

Unfortunately, at least in my case, adulting does not stop just because I’m experiencing Burnout. As a military spouse, there is no calvary coming. Thankfully, we are no longer on recruiting duty and were able to move back to Japan for our next station, where we currently plan to live for the next three years. Even so, I have to able to manage the household and the needs of all of the children and myself no matter how I’m feeling because it just isn’t possible for my husband to drop everything and step in, especially if he’s in the midst of training or deployed. My kids can’t eat whatever is convenient because of their health, and I have to be an advocate for my children concerning not only their dietary needs but the spectrum needs of my oldest and youngest children as well as myself.

So how do I deal with the stress of the everyday needs of my family while pursuing my own goals and passions without losing it? I put into place a few boundaries and practices to keep me realistic but productive and healthy.

Routine
While you can’t set a clock by me necessarily, I try to maintain the same order of events in my day. We get up, make beds and prepare ourselves for the day, eat breakfast, and start independent homeschool work while the littles play and I get writing work done. After a couple of hours, we take a one hour lunch break. The kids get cartoons and playtime while I allow myself to watch an episode of one of my shows on my laptop with my headphones in and eat my lunch in relative peace. This break is imperative to keep me from feeling like I have spent my whole day spinning my wheels as a mother, teacher, and professional with no downtime.

After lunch I work with my prekindergartener while the older continues her independent work for about an hour, and then we do reading time together for an hour or two per our literature-based curriculum. Afterward, I get about an hour before dinner needs to get started that I currently use to finish up any work that might be weighing on me, whether related to writing or household management. Dinner, nighttime clean up, and bedtime routine for the kiddos follow, and then I take the evening after they are in bed to watch TV and/or spend time talking with my husband for a couple of hours.

The nightly recharge is a necessity. If I skip it more than one day in a row, I will start to shutdown and get overwhelmed. I know this, so I plan accordingly and force myself to stop and take my designated breaks unless I absolutely do not have a choice because of work or school deadlines that cannot be changed. Even if we have obligations outside of the house, at the very least my evening break is set in stone.

Calendar/Schedule
Along those same lines, I keep a color-coded calendar that divides out the days and weeks to help me keep track of extracurricular activities, nights out with friends or as a couple with my husband, appointments, etc. I block them out and remove homeschool time or office hours as necessary, being sure to make sure we have ample time the other days in our routine so I don’t feel like I’m falling behind. I keep the calendar on my phone and computer so I can check it regularly throughout the day.

Knowing that time for work or school or errands is already accounted for keeps me from feeling like I need to get to everything RIGHT NOW. I also try really hard to set aside Sunday as a family day for a fun outing or a chill day to sit around playing video games or watching movies to completely recharge before we roll into a new week of commitments.

Self Care
The breaks built into my days and week are a great way to make sure I just relax a few hours a week to avoid getting overwhelmed, but I also know I need time to pursue my own interests. Not only do I make an effort to join social groups within our military community (I’m an extroverted Autistic woman. We exist. Hi. Also, it sucks to have social anxiety while also craving social interaction.), but I also take dance and music classes. Though I do usually need a little extra downtime after either event because of the stress of being in a social environment, I love feeling like I have an identity that is my own in pursuing these experiences.

I build work hours into my day and will soon be adding grad school studies to the mix, both allowing me to achieve professional goals that are important to me. I also make it a priority to read almost every evening before bed, filling my literature nerd cup with something not required by my academic career. Productivity is fulfilling for me as long as I am careful to balance it with intermittent social and logistical detox time.

Delegating/Being Realistic
Realizing my own limitations was a major eye-opener for the way I run my life. I simply cannot do it all. I literally can’t. I may be smarter than your average bear, but I cannot function logistically on the same level as my neurotypical peers. Now, I lean on my husband for support to cook and run errands and take care of the kids any time that he can instead of letting my control freak nature make it impossible to ask for help. (And being a team in this way improves our communication and relationship, so bonus!) I hire babysitters to take over when I have an event or appointment that taking the kids to isn’t possible or would be a nightmare for my stress levels.

I also hire a cleaning service to come to our home every couple of weeks and handle the dirt. I can organize all day long and thrive in a neat, picked up home, but the actual cleaning was lost to the wayside a long time ago during this never-ending Burnout. Knowing it will just get done without being the one to worry about how and when makes a HUGE difference in my anxiety when I notice dust or mildew that makes me twitch.

I have a tendency to bite off more than I can chew, so now I make myself stop and think about the reality of what I can accomplish in a day. I only require myself to do the minimum amount of writing for my job instead of taking on extra just because I can. I will only be taking one course at a time while acquiring my graduate degree.

I don’t focus as much on the self-imposed deadlines for our homeschooling and instead concentrate on trying to hit all of our subjects a little each day that we are at home to do school. If we don’t finish something, it is not the end of the world as long as the three R’s are the first thing we do in our routine so we are sure to maintain them at an appropriate grade level. Everything else is icing on the cake.

I don’t expect myself to go to bed or wake up early, as neither come naturally to me. I start my day around 9 and end it around midnight, with plenty of time to do the things I want and like in between. I know I need 9 hours of sleep regularly, with very sparing nights of 7-8 when I have no choice because of obligations outside the home. More than one night in a row toward the lower end, and I will not be able to function. I know my limits, and I try my best to plan around them.

It’s important to my A-type self to keep up with the daily necessities and pursue productive goals, but I also have to be mindful of the reality of my diagnosis and what that means for day-to-day expectations. Making sure I have plenty of time to recharge, giving myself downtime after social interactions, and depending on others to do what I just cannot reasonably get to during the day are coping skills I have adopted over the past year that have made it possible for me to feel fulfilled without being overwhelmed on a daily basis.

If you are on the spectrum or have people in your life that are, please be thoughtful about what overdoing it can lead to and that more help will be necessary dealing with everyday tasks than for those who are not on the spectrum. Burnout is real and can be catastrophic if not addressed. Take care of yourself, and be kind to those around you.