Im Vaccinated! Yay!

About a month ago or so, I finally got my text message saying that it was my turn to get the first Pfizer vaccine. Here in Iceland, basically when its our turn they let us know, and there are certain groups that are getting the shot first like the elderly and chronically ill etc. The months leading up to that text message, Ive been bombarded by posts of scaremongering about said vaccine. Anti vaxxers are losing their minds about it. Not only that, people who did receive the vaccine posting about how horrible it was, how sick they became, stuff like that. Ill admit its partly my fault that I kept paying attention to those posts… but it certainly didnt help my anxiety one bit. Anxiety sucks like that, you know you shouldn’t subject yourself to it but being so anxious tends to fuel the need to learn more about it. Its weird. Very often while going through an episode, I know how ridiculous I might be acting but I literally cannot do anything to stop it. My brother, who’s usually around for my anxiety and panic attacks, just kinda goes “yea it sucks,” or kinda laughs as I yell “THIS IS SO STUPID I HATE MY BRAIN!” Which is fine, hes super chill about it and really the only one that doesnt push my anxiety levels up by trying to help in a manner that actually never helps. All of that is beside the point. What was my point? Oh, right. I was so anxious about the vaccine by the time it was my turn I could barely function. I freaked when my phone alerted me that I had an appointment, so much, in fact, that by the time I actually got to the appointment I was exhausted.

My brother drove me to the appointment (he waited outside), which was at a gymnasium type place. The line was really long. So I had to walk a ways. I assumed that oh no, this is going to take forever, since the line was so long, but we were all ushered in rather quickly. We followed arrows on the floor into a room that had chairs lined up throughout. I sat somewhere in the middle. So we are all sat there, waiting, and a row of nurses with carts are standing at the front. Then someone yells “Áfram!” (which means forward! But I kept thinking of it as Onward! which was funnier.) And the nurses then move to give the first shot. Then they wait. And someone again yells “Onward!” and they move up one more and give a shot. This was funny enough to help me relax a little at least. So its my turn eventually, and the nurse asked if I was nervous, I said yes while thinking it was the understatement of the century. I didnt feel the shot at all. Then we had to sit there for ten to fifteen minutes, during which my anxiety was basically honing in on every tiny little thing I was feeling physically, expecting to react to the vaccine right then and there. Thanks a lot, Internet. But yea no, I was fine. On the way home I was retelling it to my bro in a very very dramatic way, with interludes of “Fuck anxiety…” followed by loud sighs before continuing.

The only side effect I had from the first shot was a really sore arm. I couldn’t sleep on it. And I think that soreness might have been worse than expected due to fibromyalgia. Anytime I hurt myself it tends to spread because of fibro and jump starts a flare up.

The thing about being chronically ill is that the side effects listed are basically things we already deal with on a regular basis. So often times its difficult to know if something is a side effect or just the illness. I also think that because I deal with said issues on a regular basis, the side effects were not that bad really because its something Im used to. So when the second shot came around (a few days ago) it also wasnt that bad. I noticed that I was more tired than the day before, and the headache that lasted all day wasnt that different from my usual headaches. I felt like you do when you know the flu is about to hit you, like the very beginning. You can feel that achyness and its like oh shit, I think Im getting sick. That is a regular thing when you’re chronically ill. So I couldn’t tell if it was side effects or fibro. And then it hit me, for someone who is not chronically ill, safe effects like that probably feel really really bad. Because its not their normal, so naturally they’ll react to it like it was horrible. And this is something that didnt occur to me when I was reading said posts that sent me into an anxiety spiral leading up to the first vaccine.

I came across a post some time ago that said something along the lines of when you’re chronically ill you forget that healthy people exist. Because you’ve been sick so long you cant even imagine what its like to just do things without having to think about whether or not it will make it impossible to do another thing later that day. Like okay,, yea, Im aware that healthy people exist, obviously, but the idea or the concept of being healthy is so alien now that its nearly impossible to imagine. Just writing this post is causing pain in my hands, wrists, shoulders, back and neck, which is giving me one hell of a headache.

So yea, the whole point is that the shot wasnt even that bad. The first one makes your arm sore, the second one makes you tired, gives a headache, the arm sore again but not as much as the first time. Other side effects are fever, nausea, general feeling icky for a day. So if you are not allergic, getting the shot is not a big deal at all. Dont fall for the scare mongering you see online about the vaccines. Protect yourself and your loved ones by getting vaccinated.

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It’s late and the kids are finally asleep and I’m watching a show I’ve already seen many times…

It’s the second week since I stopped working. I’m already noticing a huge difference in mobility and mental health. A positive difference. I knew that working was taking a lot out of me but I didn’t realize just how burnt out I was. Not only the repetitive movement and having to force socialization but also just being there while not actually wanting to be was taking a significant toll.

When I was diagnosed with fibromyalgia I thought the only issue I would have was pain. All over pain, localized pain, all kinds of pain really. I’m finding now that it’s so much more than just pain. Other symptoms are digestive issues (like IBS, etc. ), depression, sensory issues, vision problems, fibro fog, fatigue, and more.

Since I’m autistic Im finding that a lot of my difficulties due to autism are also becoming more prevalent. Now that may be because of fibro but it may also be that years and years of masking has just caught up with me. I’m barely able to mask these days to be perfectly honest. Thinking back I can’t help but wonder if I’ve ever really been able to mask that well, considering nobody was surprised when I was diagnosed autistic. But I digress….

My point was that I’m finding I was pushing myself so hard that it was making it very difficult to do the mom thing as well as the cleaning the house thing. And well, pretty much all the other things that a single parent has to do.

So now, two weeks without having to over work myself mentally and physically, I’m finding I’m able to keep up with my kids and home better than before. I still have to pace myself of course but until now I wasn’t able to do the bare minimum.

So I’m optimistic that I will finally be able to make progress over time. I just have to learn to pace myself. Making lists and spreading chores out over the week has seemed to really help.

Okay now I’m just rambling. Back to my show.

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Processing Recent Events…

So the last couple of years has basically been me trying to fit into the neurotypical world while ignoring my neurodivergent differences and, in so doing, inadvertently losing all the progress previously made.

It went as follows:

Received autism and fibromyalgia diagnoses. Being told by social workers to file for disability. Then trying to file for said disability but having to join a “work program” before being considered for disability. Being pushed by said work program to jump through a shit ton of hoops (some helpful, some not). Then left to my own devices (flailing in the wind, really). Physical and mental health decline. Finally filing for disability because the trajectory set in motion wasn’t working. Cutting the hours at the job that the work program pushed me into because of physical and mental health decline (the job was already part time so cutting it to so little that I was barely there). Physical and mental health continue to decline so I have to take a medical leave from work which led to being “let go” by the job last week. So now Im just on disability trying to get my mental and physical health back on track.

If Im being perfectly honest, the last two years feel incredibly wasted when considering the result. I mean, I guess the silver lining being that Im finally on disability BUT the journey there was incredibly unnecessary. And frankly, it fucked with my health so finding the silver lining in that is difficult.

In retrospect, what I should have done was quit the job when it started making things worse. I’ll elaborate. When I got on disability I cut my hours for two reasons. One reason being that I physically couldn’t endure the work for long periods of time (also I can only work so much before it cuts into the disability). The second reason was that I wanted to keep the job because it gave me the motivation to get out of the house twice a week. So it was, for a short while, beneficial for my mental health even though the work itself was strenuous on my physical health. Then, the pandemic hit, which caused an uptick in my usual mental health difficulties. Also, changes were made at the job. New management and new workers. Which yea, thats normal, it happens, but remember that change can be incredibly difficult when you’re autistic. The old management knew my struggles and accommodated accordingly. The new management did not. I tried, though, to continue working while struggling with the increase of difficulties. It became harder to communicate with customers as well as more difficult to work because of physical pain. So this decline led to increased IBS .. stuff. I took a medical leave bc I kept calling in sick, was in and out of docs offices because we (I and doctors) didnt know it was IBS at the time. Eventually though it was figured out to be IBS and the realisation that this is yet another thing I just have to learn to live with.

So I go back to work in January, Im there less than a month when the management calls me into the office to let me go. They mention that the decision was made in October, which was confusing, why was I still there in January if thats the case? I guess they were waiting to see if they could find another reason to let me go or a reason to keep me? idk it was a weird conversation. The way it played out was incredibly odd to me. And I think this is due to differences in communication. The management is neurotypical and I’m autistic. So theres bound to be confusion, most likely on my end anyway. There was a lot of open ended statements. Like, being left to make the choice of how long I work there… instead of being given a definitive amount of time. I, personally, would have preferred to be told “your fired, leave now” without all the niceties. The option of staying for up to three months was odd because I grew up in the states, where if you’re fired you are done that very day. And I mentioned during this conversation that I was actually considering quitting so losing the job wasnt upsetting. But the way it happened was so confusing, I didn’t know if I was supposed to leave or not because my shift wasnt over and the management said that I could choose to stay if I wanted so I got upset by that confusion. Since I was visibly upset, the management then said you can leave now, so I did. She made a comment that she thought I was too stoic during the “letting go” convo but I was unable to communicate at that time that I wasnt upset that I was let go, I was upset because it was done in such a non precise manner which left me confused. Looking back at it now what I should have done (this happens a lot, in the moment I dont react right away) was say that no I dont wish to continue working any longer. Because I didnt want to work any more. I had made the decision to quit recently, which I was working up to doing because I have to plan that shit out to be able to do the thing. But now Im sitting here wondering what Im supposed to do tomorrow. Because tomorrow is my next shift. Am I supposed to call in? I dont fucking know. If I dont call in, will they call wondering where I am? But why would they care where I am if Ive been let go? And why the fuck do neurotypical people leave conversations so open ended like that?

So that is where Im at now. Just trying to process the most recent events in the past two years. I had made such progress at first. The work program did help in that it helped me get therapy and stuff like that… but I was also being held to neurotypical able bodied standards. Which I could keep up with at first, but the longer I did the more damage it did without my realising it until it had already became a significant problem.

So now, I guess I will just call in in the morning to be sure. And then I will begin the journey of getting my shit together. Again.

Im gonna need to find some hobbies.

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I’m baaack…

Two years ago, I stopped writing. My health declined in such a manner that it took precedence over everything else. And I mean everything else. Not only did I stop writing, I lost interest in all things from hobbies to my own existence. By that I mean depression took over.

I’m posting this from my phone, a quick update just to get started writing again. I really hope I keep this up.

I’d like to say I have this all planned out. That I will be writing all about my journey over the past two years. However, much of these two years are a bit of a blur. Most of my time was spent lying around wallowing in my own depressed thoughts and watching Supernatural reruns. My social life (what little there was) disappeared. When it came to parenting, I managed the bare minimum. And what little I did work became very difficult to continue. I wish I could say I’ve made great strides til now but to be perfectly honest I’m only recently beginning to give a damn about anything. Having motivation to do things when one has depression…. well, those who know… know. Anyway, point being I’m on here now so that’s something, right?

So after the past two years of doctors and depression and trying to figure out how to get my shit together, I’m finally ready to start doing things. So here I am, doing this blog thing.

I know, I know… I have regressed in writing skills. I’ll work on that. Promise.

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The last few months and looking for work as an Autistic adult. Yay.

Since the latest health scare, this past summer, Ive done my best to be upbeat and to try to keep on going in my work to get my shit together.  Ive been so busy with that Ive forgotten to write anything here. So here goes.

Last summer I ended up in the hospital, with atrial fibrillation, then given meds and sent home. Now I see a heart doc every six months. The result from my blood tests at that same time rendered a few red flags so now I also have to see a blood specialist every three months. Every appointment basically goes the same. The day before the appointment I get my blood drawn, only to come in the next day for them to tell me my white blood cell and platelet count is rather high (scary) but they don’t know why (even scarier).  Nothing to worry about, they say, but we have to keep track of it so come back in three months.  I’ve been to the heart doc once, so far. He was rather dismissive of me and went on a tirade about eating better because I cant possibly have anything wrong with my heart due to my age. The EKG at that apt was perfect (according to him) but of course it would be since Im on meds to regulate my fucking heart.  Now, however, a month later, Im noticing that the meds arent working like they did at first… I feel the usual irregular thumpity-thump several times a day. Just yesterday I got lightheaded around that same time. Which is how it started last time, ending up in an overnight hospital stay.  Around and around we go.  Im so tired of being dismissed by doctors.

So with that happening, Ive been trying to get my shit together meaning basically getting back into the work force. Much of my shit is together, at least much more than it was when I first moved back to Iceland. I have a place of my own, my kids are doing great, and I do actually finally have a few diagnoses that make things make a whole lot of sense. The first of which being autism. Yep, I’m autistic. And I have fibromyalgia, which Ive been complaining about (and dismissed) since I was 18 years old. It is also likely, according to one doc, that I have chronic fatigue syndrome. I mean I guess I could go try to get a dx for that as well but I’m too exhausted (pun intended).  But I digress.

Trying to get back into the work force. Yay.  So I was advised to file for disability after my autism dx. Meaning I had to get a doctor to sign off on it and then go file. When I went to the doctor and explained it all (autism and fibro) he said that I couldn’t just file for disability -I had to go through a program where they try to rehabilitate me to get back into the work force. Like I had just gotten autism and that I could be rehabilitated… hmm… but whatever.  So I did that, and Ive been in this program, jumping through hoops (going to seminars and exercising and physical therapy), for a year now. And at this point I’m being pushed to apply for jobs pretty much everywhere, go to interviews, and apply for more jobs and go to more interviews.  Because apparently recovery time and rehabilitation is one year and you are then expected to get back into the work force. Which would make sense if I had some kind of work related injury that left me unable to work. But that isn’t what my situation is. Im autistic with a chronic pain condition that has only worsened as Ive gotten older.  And that is not even considering SPD, which has also worsened with the fibro.  Now, Im not saying its a shit program or that it doesnt do any good. It does. In fact, its helped me in several ways. Those hoops are hoops I needed to jump through for my own well being. I also have depression and anxiety, which is basically the main things that I worked on through this program. Shrinks and seminars to work with the anxiety. So Ive learned a lot of coping strategies. I have learned to exercise the right way with fibro –because you cant just jump onto any machine and work the hell out, no, you have to work up to that shit and always be careful. So there is definitely good that has come from all of this. I won’t deny that. It hasn’t been a giant waste of my time or anything. However, I cant help but feel that the fact that Im autistic is being ignored. And I cant help but feel that the social workers have too high of an opinion of my capabilities. I partly blame my resume for that. My resume (from ten years ago, mind you) betrays me every time I try to explain why I cannot work certain jobs. Ive worked those jobs before, so why cant I now? Things have worsened, I say, again and again. The progress I have made is awesome, no doubt, I am proud of how far I have come. But again, that progress betrays me in the sense that while I know my limits, others don’t seem to understand that I have any. Which I guess is something that pretty much every autistic person can understand: NT expectations. Having people expect us to do things like everyone else. It is why ABA therapy is so popular, because they want us to be like everyone else. Even at the cost of our own well being, hide our autism. Good dog.

I realize Im being a negative Nancy about this. I do. And for the most part Im usually rather positive about most things. But today is a bad day. Yesterday I went to two interviews, I even went to the mall (to my own detriment and sensory overload, awesome sauce) and was in tremendous pain before I made it home. The socialising aspect of the interviews is HARD. Therein lie some of my larger difficulties. I never get the job if I have an interview to go to. Which is another reason why my resume betrays me. I didn’t get those jobs. I was referred by family or friends, which meant I skipped the interview and went straight to work. And at pretty much every job Ive been told by supervisors that Ive nearly lost the job in the first few months because it takes me a long time to adjust and mask accordingly. This shit is exhausting y’all. And not just because I have fibro and fatigue. Socialising is hard for many autistic people, especially for one such as myself. I cant read facial expression or body language. I have face blindness. I don’t know if a person is upset or happy or why they would be. I go by the words they use, and I interpret those literally. This causes a lot of misunderstandings, ones I don’t even realise are happening until way later. When I do come to that realisation, usually through a memory replay over and over again, I stress myself out about it for no goddamned reason. Im working on that last part.

Today I had an appointment with a person who is supposed to help me find work, and basically she told me to start doing things like looking online and thinking about where I want to work. Okay, Ive already been doing this, Ive been going to interviews. But Im in such a fog today, from yesterdays buildup no doubt, that I couldn’t verbalise that at all. I barely managed to tell her my medical history. I kept losing my words mid sentence, swoosh, out of the brain and into the void. But thankfully she is super patient, and said its no big deal we will discuss next time. Thank fuck for that. Thank you social worker lady, I appreciate it. I was so overwhelmed by my inability to communicate that I was holding back tears on the way home. Probably nearing a shutdown. Or a meltdown. I cant tell which.

Ive managed to avoid it (shutdown or meltdown) until I got home, had a coffee, took my heart meds because I forgot earlier, and am now sitting here in a fog trying to sort through my thoughts. So I apologise if Im writing like a fifth grader. Words escape me.

Thanks for reading.

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Journal: Update on health stuffs…

This past month has been difficult. Not only health wise but mental health wise. Due to the stresses of waiting for results, my anxiety has been skyrocketing, even though my heart meds totally calm me compared to how my anxiety used to be.  And my depression has reached some rather really low points as well. While in those vast abysses Ive learned to just sort of ride the wave, so to speak, until I came out of the other side and kept going.  But of course, I wouldn’t recommend another doing such a thing without going to a mental health professional and discussing what their options are. So don’t take what I say as an example to follow. I do have a shrink I discuss things with, and while Im not on meds at the moment, it might be possible that I need them in the future.

The day after my last post, I had an appointment with the haematologist, to discuss my latest blood test results.  He seemed nice enough. So I sat down, anxiety ridden, and he says my platelet count has dropped to the line of being a “high normal”. It all seemed rather anti climactic, really.  I was expecting to hear that I had a baby alien living in my chest and only had moments to live, or something equally dramatic and scary.  But apparently, whatever had my platelet count up when I had to stay in the hospital, was either correcting itself (probably some kind of an infection) or had run its course…  they still couldn’t tell me what it was.  But the relief was rather nice, and made me forget all about the questions I had lined up for that appointment. So I left feeling rather disappointed. Not disappointed in the not dying part, but disappointed in the fact that I still don’t have any real answers as to what caused that sudden influx of platelets along with my very scary heart thing.  And not to mention, the abdomen pain, I still have it. But a CT scan shows nothing wrong. So what the hell?  The doc said its most like IBS (irritable bowel syndrome). Which, has a tendency to pop up in fibro patients, so that one wasn’t really a surprise. But again, disappointing. It would have been nice to pin point something, treat it, and possibly feel better afterwards.  No such luck, not at this time.  I go back in two months for another blood test. So, more waiting. Fan-Fucking-Tastic.

After that visit, and a few days of overthinking the very boring results, I decided to make an appointment with a gynaecologist, for the regular checkup. This is a doc Ive always been too anxious to make an appointment with. But I managed to make the appointment. I have an IUD that is way past due for replacement. And I can’t help but wonder if perchance, the issues Ive been having, are they due to that? Only one way to find out. I don’t have any super serious pains in my pelvic area or anything, but PMS is a major bitch. And on an IUD, periods should be basically non existent. Which they were for a long time, but PMS reared its ugly head a while back (longer than Im willing to admit) and that is usually a sign its not working anymore. So that unidentified infection may be rather easily identified, perhaps? But hey, Ill know in a little over a week.  I also made an appointment with my regular doc, and can’t remember why. I know I had a reason in my head as I made the appointment but it just *woosh* left my mind as soon as the appointment was made. Im sure it will come to me before I get there.

So now that all the scary stuff is over with, for now, I can get back to the regular routine of the kids going to school, getting the DB back in speech therapy, and finding work for myself. What I *really* want to do is find my way back to University. Perhaps Ill look into it later. First things first, gotta get my shit together and take care of these kids.

Anyhoo, thats all for now. Thanks for reading.

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Journal: Health issues, hospital stay, blood test results. Anxiety.

I had planned to write so much over the summer, alas, that didn’t happen like I wanted. Instead, I have been consumed with fears about my health.  A hospital stay, blood tests, and waiting have taken up all of my head space. So this is about that. A personal post.

For the past few months, regardless of any physical activity I have tried to keep on a regular schedule, I have been more exhausted and in more pain. Mentally, I feel fine. Which is a plus. But physically, it is like no matter what I do, everything hurts and I always feel sick in some way.  So mid summer one day, I nearly fainted. I chalked it up to not eating that day. But then the next day, it happened three times. So I decided to go to the hospital. As I was standing up to go tell my brother to drive me, I collapsed. Not only was I incredibly dizzy, I could barely breathe and felt so so tired. It was like I had ran a friggin marathon. My heart pounding and irregular. (I don’t think there was any pain, nothing serious anyway, but pain is difficult for me to notice sometimes) I spent the night in the hospital due to an irregular result from an EKG at the night docs office. Turns out it was atrial fibrillation, and I was put on meds to stop that from happening again. They asked me question after question. Any changes to diet, have I been injured, etc. I couldn’t answer, for as far as I know, nothing has changed. So a lung X-ray and an MRI of the abdomen later, they told me they couldn’t find anything and sent me home. I then got a call later that day telling me that my blood test showed a high level of white blood cells and I was given an apt for another blood test. Then another appointment to speak with the haematologist. At that appointment I was told that my platelet count is high. So I was to have ANOTHER blood test done and then come back in two weeks. They mentioned a possible bone marrow biopsy, which sent my anxiety through the roof, but they assured me that something would be found in my blood tests. They were probably trying to make me feel better. But the fact remains, my autistic brain took it to the overthink level and I, of course, had to research as much as possible.  This next appointment is tomorrow where I get to hear the new results. Ive read as much as I can find on what the platelet thing means, there are too many conditions that can cause it. So of course, Ive been trying to keep track of my symptoms to maybe try to figure it out, so that Im not surprised at my next visit. To no avail, I might add. Because I have never been really good at pinpointing exactly where and what hurts.  Which is an autistic thing, apparently. High pain tolerance and difficulty gauging physical stuffs. I feel the pain, but the severity doesn’t register. I have abdomen pain pretty much all the time, but the last scan showed nothing wrong. Oh, I forgot to mention the docs said, two weeks ago, that my spleen is swollen. Which is a result of the high platelet count, or could be several of those conditions that I mentioned earlier. One good thing to come of all of this, is that the heart meds, while the side effects sucked balls for the first couple of weeks it has totally helped my anxiety. I still get anxious, but I don’t get it to the point of being completely disabling in the moment. So there is that. Silver lining. Trying to keep it positive.

Just reading about the platelet thing sort of helped, but it also gives me pause, because some of the conditions that cause a high count are rather scary. While the logical part of my brain is telling me to stop googling and just wait for the results, all the rest of me is going to the worse case scenario. And I hate waiting. I hate it so much.,

Anyway, this is what is on my mind lately. Apologies for grammatical errors and such.

Thanks for reading.

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My thoughts on “13 Reasons Why”.

The following was actually a Facebook status of mine, but I figured what the heck, copy paste that mofo, it works as a blog post as well. Since it’s my thoughts on a show about suicide I’ll add a possible Trigger Warning.  

So I finished 13 reasons why. (probably going to be spoilers but none really about the story itself, I’m mainly talking about the overall “message”.)
I get the premise of spreading the whole “let’s be nicer to each other.” However, I feel like it’s more emotional porn than anything else. As entertainment, it certainly fits that criteria, as in you watch sad movies to cry, comedies to laugh, and this show to basically feel all the damn feels. It is well made (for entertainment purposes, anyway), and it certainly throws you around violently in every direction as you watch the different stories. From the beginning it draws you in and I’d wager many people binge watched it, I did.
For me, personally, it hit way too close to home. It was very difficult to watch but difficult to pull away as well. I related to Hannah, the one who made the tapes that Clay listened to the entirety of the season. Each episode was a different side of a tape, cassette tape, or rather, each side was a reason for her suicide.
Anyway, I get why people like it so much, in the sense that it teaches a lesson, one that sadly, not everyone already knows even though they fucking *should*. That our actions will have consequences, that you never know what another person is dealing with, how we treat others really fucking matters.
Now, I don’t think it romanticizes suicide, at least I didn’t get that when watching it. But I certainly wouldn’t recommend the show to anyone who is suicidal. It’s very detailed, very graphic, and there is absolutely no sugar coating. But I guess to get any real attention these days is to shock the shit out of people. So that was accomplished, I’d say.
As for it seemingly being a revenge suicide, whether people got it or not, it certainly was depicted as that. Especially in the first few episodes. I didn’t like that.
Farther into the season, you get more of a sense of what she is going through, you see more to help you understand. As opposed to the first few eps that seemed to depict her as over reacting or misunderstanding things (Again, rage boiled, deep inside of me when I picked up on that).
The ways people behaved, their different reactions (usually the wrong reaction) did get on my nerves. But I understand that many people do stupid shit, that teenagers especially can be incredibly cruel and selfish little shits.
The last three or four episodes get even more serious, with viewer discretion warnings, due to depictions of rape or violence or suicide. So yea, when you get to those it’s a pretty rough fucking road, if it hasn’t been already, that is.
I’m not saying it’s a bad show, but I am saying it could be problematic for someone who might be living with depression or suicidal thoughts or tendencies. To get rather personal, I have depression and I have, rather recently, dealt with suicidal thoughts, and have only *just* really started to feel better. I wasn’t going to watch it, but my morbid curiosity got the best of me. Also being autistic, I tend to not handle emotion well on a good day. So I actually knew better but I wanted to see so that I could form an opinion.
Objectively, the show is entertaining. It’s an emotional ride for people who like to cry in front of their televisions. (spoiler alert: I’m not one of those people.) While I see how a lesson to be nice to people can be gained from it, I think it’s more for shock value. I also think this show is more for people who are not in Hannahs shoes, but rather for people who would be in the shoes of those she listed on the tapes. So yea, for that, it’s a good show.
But before someone goes on to tell me how much they think the show is great and all the good it does… do keep in mind that I was affected rather negatively by it. The show *can* be problematic for some. I’d appreciate it if people would acknowledge at least that much.

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My Response To “Autistics and Parents of Autistics – Aren’t We All On the Same Team?”

I’ve been scrambling for things to write about lately, as you well know, if you have been keeping up with me at all this past year or so. My creativity has been severely blocked by life and all its glorious difficulties.  So when I came across a certain post written by an “autism parent” or rather, a parent of an autistic kid, I felt I needed to respond because this post is a bit incorrect. While I guess I can understand why this person came to this conclusion, I think that is more so due to lack of listening to #ActuallyAutistic people, than it actually being how she perceives it.

So first off, if the author ever reads my response, I’d like to point out that I am an autistic adult but also a parent of two autistic kids. A single parent, if that even matters.  So with that out of the way, onto the post. (Edit: I can’t link the post, it has been deleted or made private, however I’m keeping this post up because these points need to be made.)

There are just a few points I’d like to make, rebuttals, if you will, on a few things. The overall feel of the article is a bit “doom and gloom”. It starts off with talking about Autism Awareness Month, which is fine, but then goes to say However, there is something rather sinister going on beneath the surface of all this awareness-raising. Which is referring to autistic adults speaking out in online groups against things like Autism $peaks and their light it up blue and puzzle piece and generally pushing for acceptance instead of awareness. But I will explain it more so as we go along. The next thing:

There is a divide within the ‘autism community’ (and I’ll come back to that term in a minute), particularly online, and I think it’s getting wider. There is very much a ‘them and us’ feeling between people like me, a parent of an autistic child, and those who are actually autistic themselves.

You’re just now realizing there is a divide? This divide has always been there. The difference now is that we are in your faces instead of locked in institutions or clumsily going through life without any help or support.  I’ve mentioned this divide in the past, last April, in fact. Many other autistic bloggers have mentioned this divide. And we have been trying to figure out the best way to try to bridge this gap between us, but we cannot do it alone. *Some* progress has been made, but I guess you wouldn’t know about it since you aren’t listening to us. Moving on.

Some of those who are #actuallyautistic (they even have their own hashtag) believe that people who are not autistic themselves should not speak for, or advocate for those who are, including their own children. They believe that the only voice that should be heard is that of autistics and they get quite arsey about it.

That part is blatantly wrong. Those of us who are #ActuallyAutistic, the hashtag is a testament to the neurodiversity movement gaining momentum which is fucking awesome, do not want to push parents completely out of the way. What we do want -and yes I realize I’m saying we like I speak for all of us, to be clear, I don’t presume to speak for each and every one of us, but we do have a general consensus on some things, this being one of them- is for autistic people to speak for themselves. Saying we want to be able to have a say in our own advocacy does not mean we are saying for the non autistic people who want to be allies to get out of the way. It’s quite the opposite. While we do feel that autistic people should be at the forefront on this, since it is about us, we also want to educate others in proper advocacy.

The trouble is, for many of our children, we have to be their voice, because they do not have one of their own – literally in many cases. Or, even if they are verbal, they may lack the capacity to voice their own opinions. I am ****’s voice right now, because she’s five and isn’t really able to advocate for herself just yet. However, I don’t write about how she’s feeling, or what she’s thinking as I can’t always know this; I write from my own perspective, that of a parent. As soon as she’s able to voice her own opinions I’ll help her to express these in whichever way she sees fit, be that on a blog, or a vlog, or even not at all if she doesn’t want to.

This I have to say we differ a bit when it comes to parenting. And this might be my literal autistic brain at work here, but I can’t possibly consider myself to be my kids voice. Not really. But I am inclined to believe that non autistic people interpret “being their kid’s voice” as a little different than what I am thinking of.  I will point out that I have never, nor have I ever seen another autistic person, told a parent they shouldn’t be their kids voice in the sense of fighting for services with docs, schools, and all the other mess of things we have to do to get the kids the help they need. Now correct me if I’m wrong in assuming that THAT is what you mean by being their voice. My literal brain is also not referring to being my kids voice as to making assumptions about what they are feeling or thinking, no not at all. What I call being someone else’s voice is disclosing the most personal things about them, vulnerable moments, that perhaps they’d be incredibly embarrassed about if they learned that was plastered all over the internet for strangers to read or see. That is the kind of voice I hope no parent ever strives to be.

Some of the autistics that lurk in the comments on facebook pages tend to be intelligent, articulate and, I’m sorry to say, quite nasty. 

Some of these autistics do not consider us parents to be a part of the ‘autism community’ unless we actually have autism (which, I’ve noticed, is generally assumed we don’t, but this is not always the case; there are quite a few autistic parents out there). I understand this, to a point. After all, I would not consider myself to be part of the black community as I am clearly not black, so why do I consider myself part of the autism community even though I am neurotypical?

We don’t lurk, we interact. Lurking sounds so… predatory.  Stahp with the doom and gloom, please.

Let me explain something. At this point there are two communities. There always have been. One, the “autism community” are the non autistic people, parents, caregivers, and I guess we can even throw the professionals who “work with” autistic people, even though some might put them in their own category of community, but that is beside the point. And two, the Autistic Community. The autistic community is only autistic people. The difference is so obvious here. A parent who is not autistic is not the same thing as someone who is autistic. We have completely different experiences. I say this as someone who is both.  (I will be exploring this further in another post, perhaps.)

The thing is, I live autism. My life revolves around autism, every single day, and, most likely, will for as long as I live. Everything I do, I consider the impact on ****, or ****’s impact on it – everywhere we go, everyone we see. I eat, sleep (ha!) and breathe autism. So, although I may not have the condition myself, autism is my life. If I can’t be a part of the ‘autism community’, where do I, and all the other parents, belong?

Yes and no.  While a parent or caregiver’s life might revolve around all the decisions to make and plan around and deal with and observe the autistic individual, the parent isn’t exactly living what it’s like to be autistic. I think perhaps a better way to phrase it would be “this autistic individual is my life” rather than autism- because autism is the autistic person’s life, in every conceivable way, not the caregiver or family members. A person is definitely affected by those around them, sure, but everyone has that. Everyone is affected by their family members and whatever conditions they might have, and yet I don’t think I’ve ever seen someone call themselves a “gay parent” unless they, themselves, are gay, or a “transgender parent” unless they themselves are transgender, or an “anxiety parent,” because their child has severe anxiety or whatever other many things a person’s child can be or go through. While yes, a parent is affected in many ways, good or bad is not the point, the parent still isn’t going through it like the child is. These are two completely different worlds for the simple fact that a neurotypical parent will never see it through autistic eyes. It’s perfectly fine for a parent to try to be an ally, in fact, I encourage it, but be aware that there are right and wrong ways to advocate/be an ally. Where do the parents belong? Well you belong right beside your kid, of course, being a proper ally.  At the moment, your community IS the “autism community” just be aware that there is a separate community full of autistic people that should be the one’s at the forefront of every autism conversation.

At the end of the day, are we not all trying to do the same thing? Surely we all want to raise awareness of and to promote understanding of autism so that all those who are autistic are accepted in society and life can be just that bit easier for them? So, I don’t understand why some autistics have such a problem with parents like me, who write about our children and our lives. I believe it’s important to share how a neurodiverse family interacts and manages daily life and the number of parents who have contacted me to thank me for being open and honest is testament to that.

To answer the questions, yes and yes. If that is indeed what you are after then yes we want the same things.

But I will say that I do have a problem with the way some “autism parents” write about their children’s lives.  Before anything else, I am autistic. I always was. I was a kid once and so when I see parents talking about their kid the first thing that comes to mind is how would I feel if my parents talked about me like that. I’m willing to bet that this is probably how others view it as well, at least, that they think about their own upbringing when reading anything they might perceive as negative when coming from parents. I don’t care if a parent wants to write a blog as long as they are respectful of their child. Now, I’ll admit, Ive never read your blog, I do not know you at all and I’m quite sure you are a loving parent. However, there are some bloggers that I have read that go into very gruesome details about their kids and even post pictures and videos of their child’s most intimate and vulnerable moments. Those are the kinds of blogs I despise, with a passion. Because again, I consider my own meltdowns and vulnerable moments and think about what if my parents did that shit to me? I’d be devastated.

I would imagine most of these autistics – the ones who are on a mission to gag us parents – had parents who supported them as children, who advocated for them, who were their voice until such a time that they could speak for themselves (or hide behind their keyboards, at least). So why do they feel that our children don’t deserve the same? Perhaps it’s because when they were children, the internet wasn’t a thing and people just didn’t share their lives so openly? But times change and this is the way it’s done now.

Those of us who advocate are NOT on a mission to gag parents. Never have been. What we have been trying to do is get parents to listen to autistic people. I actually have written a post about this not that long ago, titled Autism Acceptance: Listen to Autistic people which covers a few of the things I am peeved about when it comes to not being listened to.  Your assumption that we all had parents who advocated for us, or supported us, is incorrect. Many of us are so passionate about Autism Acceptance because we never had that while growing up, not even from our families. That is also why we get so aggressive at times, because we CARE SO MUCH. The idea of any other autistic person going through what we had to go through really freaks us out, in fact, I’ve been terrified for many people I’ve never met just by reading some of the things their parents so easily spew on the interwebs, because of how familiar it is. So for the most part, in my case, it isn’t even about me or my kids, it’s about helping anyone who might find themselves in such difficult situations such as mine. My childhood was no picnic.

After stressing that her post isnt about all autistics she closes it with:

I feel really sad that this division exists, as surely we all want a world that is more accepting of autism and those who are on the spectrum? Does it matter that much how we go about it? I’ll write about it my way, you talk about it yours. We all have different experiences to share… after all – different not less.

We are sad about the division as well. And we are working to try to bridge that gap. In fact, we even have groups for allies to learn from autistic adults. It is a first step I think, but it seems to be making progress. So it’s not all about arguing with parents online, but sometimes we have to push a bit to get our voices out there. I’ve known plenty of parents who started out on the opposite end of my advocacy that are close online friends of mine now. So that gap or division can be bridged. It really can, but something has got to give on the side of the parents, we’ve been making strides to try to help you. And while we may not communicate it in the way you prefer, please don’t tone police us. To answer your question, does it matter how we go about it? Yes. It matters. It matters a whole hell of a lot to autistic people. Which makes me want to raise the question, why doesn’t it matter enough to you to find out why it matters so much to us?

So I will close with this. I most certainly do not want to silence parents of autistic kids. The parents should be our best allies. After all, you parents are there in the thick of it with your little ones, putting in a whole hell of a lot of work. All that I ask for is for your ear. Just listen to what we have to say. Our experiences might benefit you, in at least getting you to understand a bit better what it is like to be autistic. Maybe something we learned along the way can help you. But we can’t know that if you wont listen to us. The divide is because of things like “I’ll do it my way, you do it yours.” No, that is not good enough. We have to do this together, do we not? Put the autistic people at the front and listen to what we have to say, then in turn take what you learn and share it with the world, since you, the able bodied person, are sitting in a place of privilege after all, your voice, in today’s society, is more likely to be listened to. That is just how it is right now, but help us change that so that your kid has a better world to live in.


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Our Routinely-ish Morning Scrambly Thing.

I don’t usually like talking about the kids too much, I don’t want to invade their privacy like that. However, I’m at a loss as to what to write about for Autism Acceptance Month. So I was like, dude, write what you know.  And yknow, this came out. 

So, as we all know, it is rather important to have routine in an autistic household. It is, however going to vary from family to family as to what works. For us, we tend to find our routines in the midst of all the chaos that is our household. I’ve been pushed by social workers and the like to make tables and lists and routines up the wazoo, and yknow what, there is such a thing as too much routine. Or maybe I’m just saying that to make myself feel better about the fact that I’m kind of a stumbler through life, on a good day. But whatever, by stumbling I happened to have come across what works for us. So, points to Slytherin. (Yea, Im a nerd, Slytherin house, woot woot!) The following is our morning routine, or rather, what barely passes for one. And I’m perfectly okay with this, I’m not looking for advice, just trying to show what it’s like for us, all of us being autistic, and all that… 

First, the oldest of the offspring wakes at 6.30. Yea that’s right- he wakes himself. His alarm goes off a full hour before mine. He pokes his head into my room to tell me what time it is every thirty minutes.  He gets dressed as he watches either his favorite Youtubers or Rick and Morty.  Normally, I don’t get to sleep for that hour, though. My kiddo is barely a pre-teen and bombards me with “where is my ____?” questions usually for that hour as he finds his shit. Not only does he get dressed by himself while yelling at me the whole time, he also gets his bag ready (unless I remember to do it the night before) and he gets his snack and keeps an eye out for his ride to show. All while announcing what he is doing in between questions of where things are.  It works for us.  I have serious issues with sleeping (as some autistic people do) and waking.  While it is difficult for the pre-teen kiddo to fall asleep, which is something we are working on together, he has no issue waking up… yet.  The Destructo Beast (DB) usually sleeps through all of this right next to me.  A heavier sleeper than the rest of us, I can have a full blown conversation (we don’t have “inside voices”) with the kid for at least most of that hour before she stirs.   Eventually, she wakes and goes out to the living room and yells for yogurt, juice, and cartoons.

By the time DB gets up, I’ve peeled myself out of my bed. The kid (I have no clever nickname for him, and I’ve asked if he wants one, he said no.) is grabbing his bag and out the door yelling “my ride is here, bye!” by the time I’m getting the DB her juice. The time is somewhere between 7.40 and 8.00 by now, and the DB is supposed to be at school at 8. This school she goes to is basically a pre-school, so her being late isn’t that much of an issue. As long as she is there before 9 the teachers don’t give me too much shit about it. Honestly, I pay for her time there, I wonder why they give me any shit at all sometimes, considering they get paid regardless. But that is beside the point. On a good morning I get her there at around 8.15. On a shitty morning, when my fibro is already in flare, it takes a bit longer. I’m working on it, but I can’t really predict these things. It doesn’t matter what time I go to bed the night before, the morning is an issue all on its own. Sometimes, it seems, if I barely get any sleep I manage to get her there closer to on time.  But, yknow, it varies. I cannot predict these things. Even if I have everything ready for them, clothes, bags etc., it still doesnt work out the way it *should* the next day. But I continue to digress. (Notice how the REAL issue here is my fibro, not Autism. Just wanted to point that out.)

Where was I? Oh right, the DB has her juice, yogurt, and cartoons. I scramble her clothes together (if I haven’t gotten them together the night before, which I usually don’t) and then proceed to attempt to dress her.  She has a tendency to- playfully- make it difficult to dress her sometimes. And she is so darn cute that I don’t ever really get angry about it. I might get slightly irritated but we manage. After she eats, drinks, and is dressed we head out the door. The walk to her school is short, maybe ten minutes, if that. Some mornings we drag that walk out, as she gets distracted by things, and I get distracted by things…

Mind you, all of this happens before my first coffee. And most of the time I head out with DB while still in my pajamas. Then I head back home and make a cappuccino, caramel flavored, of course, and sit at the computer checking my FB and whatever else.  This morning I took my time walking back, I found a few photo opportunities.  I’m feeling particularly gross today because I have been sick the past couple of weeks, and my stomach has been gymnasticating (that’s a word, right? No? Whatever, it works) it up like crazy and I’m exhausted, so going up three flights of stairs to get back into my apartment was more than a chore.  Anyway, after my fb and coffee I then dress and get ready for whatever crap I have to do that day. Perhaps that is a post for another time, idk.

I want to end this post by saying that I don’t disclose my mornings in any way to complain about how hard it is to raise autistic kids or whatever. I mean yea, we have our rough times, but we also have an understanding… well the kid and I have an understanding while doing our best to accommodate the DB until she is old enough to join this understanding of ours.  The kid and I work together on many things, while we are both autistic we have many differences and we clash rather often. For example: I cannot stand being touched, the kid likes hugs, we have to compromise and he understands why. That sort of thing. We worked out our mornings a long time ago, he prefers to do things himself pretty often and he knows that if he needs help he can tell me and I’ll push past my boundaries to do so, if at all possible.  So while we have our issues, I have to say that we don’t persevere despite our autism, we do things this way because we are all autistic and it works for us. I have actually tried doing it the way others have “advised”, and it does not work… It just doesn’t. That is the thing about an autistic household, especially when all of us are autistic, not just the kids, things are just different. And there is absolutely nothing wrong with that.

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