Daily Slice of Dystopia

May you live in interesting times. That statement is allegedly a Chinese curse and I have to say that times have gotten well past “interesting.” The Covid-19 pandemic is coming under control in many places but it is still raging across the US. A few states seem to currently be experiencing less new case but others are seeing rates skyrocket. Things are supposedly getting better in my state so the governor is saying certain places can open up in certain ways but these phases of reopening are much too short. We aren’t giving each phase enough time to see the actual impact on number of cases before starting the next phase. I think we are headed for disaster. We may get there more slowly than some places, but disaster is the destination.

I have 3 grown children living at home unable to go out and look for jobs because of the risk of exposure to the virus. They are all on the Autism spectrum and the older 2 have always had trouble finding work, my middle child has literally never been employed except for work-study at the local community college, the oldest has been hired in restaurant and by a pharmacy chain in the past. At this point neither has worked since March. I came up with an idea so they could do some work over the summer that would save us money and gain them a useful skill: they can scrape and paint our house, or at least most of it. They are going to watch youtube videos to learn how and start at the back of the house for practice. We’ll get all the supplies, of course, and pay them a small stipend because it just wouldn’t be at all fair otherwise. I’m hoping that learning the skills and having the experience will give them both a boost in the confidence dept. and that having an income of some sort again will lift their spirits. It would be epic if either of them could go on to get work as a house painter. Anyway, that’s my scheme for the girls.

Our son has had a short gig as a paid intern for a few weeks the last 2 summers that has been amazing for him. My husband had been asking for an intern to take care of the returned student laptops each Spring. It is low-level work that includes physical cleaning, sticker removal, etc, checking them in, sorting out and shipping the ones that need to be repaired, and cleaning them out of all user information. It’s something that can be learned with maybe an hour of training and not something the Director of IT should be doing, especially when his workload is through the roof. So 2 years ago his immediate boss was suddenly on board and suggested our son could do it as he had just turned 16 and wouldn’t it be a cool experience for him? Heck, yeah! Our lad enjoyed it very much and has been shockingly good at not spending the money he’s earned. Unfortunately, they are balking at hiring anyone to do it this year. It’s insane, my husband is drowning in work, his assistant is drowning in work, and the internship is minimum wage. Further, we have all the stuff here already and having the lad do the work keeps us safe as much as is possible. Hopefully they will decide to let the kid do the work.

Meanwhile, I am back to work, and my husband is basically being told that he will have to work on campus when they reopen in the Fall. That right there is assuming a lot. It’s assumes we won’t be back in lockdown by the Fall, that there won’t be massive travel restrictions to and from the US, etc etc. It sucks that they are asking to come back to campus. He is seriously at risk for the virus, it is an international school, and he has proven conclusively that over 90% of his job can be handled remotely… except during certain brief spans of time that require him to accept of return physical objects on a frequent basis. I am furious that they told him “even if there were positive cases of Covid-19 on campus” he “should definitely still be on campus.” It is lovely that have agreed to go ahead and install all the protections he has asked for in his office, and agreed to all the procedures he has insisted on for no direct contact with staff or students, but then they tell him he will still have to go to offices and classrooms to fix projectors, printers, and other things. !!! So, he’s protected in his office (which is right by a direct entry/exit point to outside) but then he’s supposed to just walk through halls to rooms with staff and students in them? What sense does that make??? He suggested they hire a temporary IT intern to handle these things because they are very low-level anyway and he will be going nuts in the Fall trying to finish the database conversion on top of all the usual stuff (WAY too much stuff) he has to do. They suggested they could buy him a HAZMAT suit. Utter insanity.

Everyone is tired of the restrictions, everyone is tired of face masks, handwashing, social distancing, and all of it. It sucks. But is all very necessary to try to stop what is shaping up to be a horrifying tidal wave of horrific illness and utterly miserable Death. Everywhere I go I see people without masks, not that I am out and about, I’m talking about driving to work, the drive thru at the pharmacy, dropping off our household trash, and gassing the car. There are way too many people not taking this seriously. And my state is one of the better ones for this sort of thing! We are going to see number of infections rising in the next few weeks and I am going to stay home again no matter what the governor recommends even if it means I lose my job. I am not bringing this damned thing home.

Dystopia is here. This is where we are. We have a virus on the rampage and even though we are tired, bored and completely over it, the virus isn’t. It is not tired at all and it is spreading at every chance it gets. Even people with very mild cases of it are at risk for some extreme complications for a long time after the infection has faded. This thing is no joke and if you think herd immunity is some kind of answer I suggest you research the ‘black death,’ the Bubonic Plague that ravaged Europe all those centuries ago, that is what herd immunity looks like. Relying on herd immunity without a vaccine is UGLY and it reflects the utter and abject failure of the leadership of this nation to protect its citizens. They knew for months this was coming and did nothing. Now they are literally asking and expecting the American people to die for their mistakes to save the economy, to make economic numbers look better so the monster in chief can get re-elected. It’s all a fucking game to him and to his ultra-rich cronies and they view the rest of us as disposable pawns.

Living the New Normal

As of today we are under further restrictions here. The governor asked everyone to shelter in place. He didn’t make it an order but I cannot tell you why not. We have got to all stay home as much as possibly possible to try to contain this thing and keep it from destroying our entire health care system. I mean, the health care might suck here but imagine if it was GONE. I have no idea what that would be like and I am trying my hardest NOT to imagine it.

I buckled down today and made and printed up lists of chores/expectations for each other offspring and made a chart of the week showing what each of us has on our schedules, (classes, work from home, skype therapy etc) plus suggested evening family activities. I posted it all on the fridge and put in in a binder along with any special rules and suggestions for life here during the quarantine. (Don’t open the door to people, never flush sanitizing wipes even if you wiped down the toilet with one, suggestions for exercise, etc.) The binder now sits on a side table in the dining room so everyone can check it if they want to. Having 3 autistic kids means I need to create some kind of schedule and specific expectations, as well as outlining procedures they can follow if they get overwhelmed. I put some camp furniture and an airbed in the empty apartment along with a tv and dvd player so anyone can go down there and be alone for a bit if they get overwhelmed or annoyed. I think we’ll add an old game system and some light refreshments and other small comforts. There’s a full bath too so long breaks will work well if any of them needs one. Or if the hubby and I need one!

My boss asked for an accounting of what work I’ve done from home and when and in trying to put that together for her I realized my little notes to myself SUCKED and were completely disorganized. I came up with a new system for tracking my activities for her that will work much better. Bullet Journal to the rescue! (again) If you’re having trouble staving off the chaos during confinement, or anytime really, I highly recommend bullet journaling. It’s simple and completely adaptable to whatever your needs are and you change it up in an instant absolutely whenever you need to. There are some great books on it, the original is by Ryder Carroll: The Bullet Journal Method, and that’s where I started. My current favorite book about it is Dot Journaling; a Practical Guide; by Rachel Wilkerson Miller. It’s very visual and a lot less intimidating than some of the information out there, less overwhelming and more reassuring. I’m using one of her examples of a “daily spread” to track my work from home activities.

Thursday marks 23 years of togetherness (not marriage we’ve only been married 16 1/2 years) for my husband and I. He asked me a month ago what I wanted to do to celebrate, we celebrate everything like goofballs, and I said I didn’t know. Maybe dinner and a movie? I think we had a movie in mind but I can’t remember which one was supposed to come out around now and we probably would have gone out for Indian food as it’s a heavy favorite with us. Our options have narrowed a touch, what with the isolation and all, so we’re going to stay home, watch a movie on Netflix or something, and eat whatever I come up with for dinner that night. Neither one of us even had the chance to buy a small gift for the other. I probably have a card stashed somewhere if I can find it. We also didn’t remember, what with the state of the world and all, to order anything in time. I told him to look over the offerings on STEAM and order a cool game but I don’t think he’s going to. He’s busier working from home than he was working at the office. It’s ridiculous. I’m really proud of him though, he is kicking ass getting everything together for distance learning for when the kids “return to school” next week. Everything depends on him. I know he’s stressed but once everything is up and running, and the staff and kids get trained in it, I think he’ll be able to scale back and take a small breather.

CAUTION: RANTING AHEAD

Okay, I’m going to vent, you’ve been warned.

I have 3 non-neuro-typical kids ages 17-26. All of them still live at home and are not fully functioning adults at this time. All 3 suffer from depression, 2 from anxiety, all 3 have other issues as well. The older 2 kids are my kids and my husband’s step-kids which adds a little something to the mix. My husband has a good job that keeps a roof over our heads, food on the table, etc. etc. I work part time.

My eldest works part time and studies a computer book toward a certification… hopefully. Eldest drives and deals with her car insurance and oil changes and stuff. She helps around the house doing dishes, vacuuming, pet care. She spends some of her time writing what I think she describes as fanfic. Her writing, and the response she gets to it, give her a boost of self-esteem. I’m in favor of that.

Middle child goes to a local community college studying for an English degree at this time. (it changes sometimes) The only work she’s ever been able to get is work study at the college. She probably comes close to paying us back each semester for her classes, books etc. but that’s it. She paints gaming miniatures for money whenever she can. Work there is very sporadic. She’s good at it but it’s super niche’ and a luxury few can afford. She mowed the lawn roughly 1x/week for $20/week this summer. We support her financially, obviously. She has been trying to learn to drive for years but is in no way ready to be driving on her own. Honestly, she’s bad at it. Autism in her case means not being able to process everything and make good decisions quickly. I wish my husband would give up on it, it seems like something she shouldn’t do, but we live in a rural area and she either drives, gets us to drive her, or moves to a city with great public transport which is slightly complicated by her not being able to get a job or manage her life.

Youngest is 17. He’s doing pretty well so far this year even though his 2 best friends both moved on to different schools. He seems to be making other friends and is doing ok in his classes. He’s got an adulting class which makes him anxious because he hates thinking of the future, not sure WTF to do about that. I tell him there’s no pressure on him, just calmly look at all the options and think about what he’d like to explore, nothing carved in stone, no scary deadline, and so on. I’m working with him trying to get him to manage his daily life better. He needs to get up on time in the morning, which means getting to sleep at a reasonable hour, needs to learn to keep up with cleaning his room, doing his laundry and so on. He is interested in learning to cook to the point where he can keep himself happily fed, so we work on that. He’s great at coming up with marinades and he handles all of that, he’s learning to make certain dishes and to BBQ a bit. He handles most of the dog care. He doesn’t drive yet, doesn’t have a permit. He seemed like he wanted to but backed off for some reason.

So, they are all behind where they “should” be, where most kids are at their ages, we focus on encouraging them, trying to add to their responsibilities, being supportive. It’s a struggle, it’s frustrating, it’s hard not to despair sometimes. It super doesn’t help that my husband is surrounded by high achieving kids at work, constantly bombarded by beaming parents boasting about their amazing offspring. It’s demoralizing for him and it makes him more frustrated with the kids than he might be otherwise. For myself I could stand not to have my mother constantly tell me how awesome a job my sisters did at parenting, how great their kids are and how she worries so much about mine. STFU MOM! NOT helping! I have 2 sisters, we each ended up having 3 kids, one sister has 3 neurotypical kids, the other has 2 NT and one who isn’t. Would you look at the one non-neurotypical kid? Wow, he’s doing so great. He is, he’s doing great and I am over the moon that he is. I love him. What I can’t take one more freaking second of is the idea that I somehow failed my kids, which my mother CLEARLY believes and likes to rub in my face.

It isn’t fair at all to compare my sister and I and blame my parenting for the fact that my kids aren’t burning up the sky like all parents wish for their kids. My sister had so much help that I never got. Her in-laws were very involved and often took the kids for a weekend or a week, they babysat, they helped with expenses, they got involved in the kid’s lives in real ways. During her last pregnancy, our actual father moved to live in her state, in her town, and started helping too. His parents followed him out there and lent their support. My sister is smart and fairly driven, she got a degree and a a good job and had the built in support to be able to work while other people helped out with driving and watching the kids as needed. Don’t get me wrong, I am proud of her, she did amazing, but if I had the kind of support she did I might be amazing too. We will never know. With her husbands very good job and all the support they have been able to afford everything they have needed for their kids. Nothing has really been out of reach for them, which is so cool, I really am happy for them. I love my sis, her hubby and their kids. I can’t tell you how proud I am of them. I just don’t need to hear it so, so, so often. Because….

I live very near my mom. She did not babysit. She helped with rides, which I am grateful for, but we paid for those rides with the stress of dealing with her. She could not deal with the difficulties that come with dealing with my kids, my eldest was a handful when she was younger, and my mother made it worse by setting her off, blaming me for not handling her correctly, etc. I was so stuck. She was the only one I had to help at all and it came at such a cost. She helped financially at times, always with the understanding she would be paid back in full, which we did though it was difficult. My husband’s family was useless in helping with the kids. They didn’t care to be involved with the older 2, though his brothers enjoyed spending time with them on their rare visits. We spent years utterly strapped financially with occasional bouts of being on an even keel. We had my ex to deal with and the insanity of him trying to force the older kids into his religion, then his eventual rejection of the kids as they refused to join. All the work has been on us, we are exhausted, we are demoralized and we wish like hell we knew what to do.

But this is where we are. We have 3 grown and almost grown kids who are not where they should be with life goals, accomplishments and mental health. We have loved and loved and loved these kids and done our best with what we’ve had to work with. We had therapists, doctors, and we did what we could to expose them to interests but we couldn’t afford much. We’re still trying, we’re still working hard while most people with kids the same ages as ours are now able to brag about their kid’s accomplishments we get to answer “how are the kids?” with; “They’re doing ok. Eldest is working part time, middle is in school part time, and youngest is in HS… no the younger ones aren’t driving yet, no they don’t have jobs….” Progress is glacial.

Please, if you have amazing, neuro-typical kids who are doing wonderful, I know you want to brag, and I get it, I am truly happy for you, but please try to remember that some of your friends and family have kids who are not neuro-typical or have other challenges, and though they LOVE your kids and are happy for you, hearing about all the wonderful milestones your kids breeze through can be really painful. It is heartbreaking to work so hard, invest so much love and support, watch the slow, painful progress, and when you feel some small germ of hope because a friend was tentatively made, or a kid is finally taking 3/4 of a full schedule of classes, or at last broke 30 hours/week at their part time job… to hear that someone else’s kid has 20 friends and they are all going to do charity work together in a foreign land, or they just graduated, got their masters with a 4.0, or landed an awesome fortune 500 level job. etc etc.

I don’t know what my kids might accomplish, they are bright, sweet, amazing people. They aren’t where most people their ages are, they don’t have it all together yet, or even mostly together, they can’t even fake it, really. But they are kind and creative and I am proud of them. It just feels really awful when someone asks how the kids are and I say, “well, middle child joined the history club at community college, so that’s encouraging.” and they answer with, “Oh, this other kid just got accepted at 6 ivy league schools and has to choose which one to go to now. ” I know they don’t mean to make me feel terrible but I do. My kid did a tiny thing, their’s did a huge thing. I feel like my kid’s accomplishments don’t matter, it will never be enough, it’s all some kind of competition.

Ok, I’m done. I don’t know if I feel any better, but I’m done.