Adjusting to the New Normal

So, the SSA doctor’s official word is that I am legally blind in both eyes, and my eyesight is starting to deteriorate in my left eye as well. With any luck, the SSA will approve my application for SSDI, and I will be able to get Medicaid so that I can (I hope) slow down or maybe even stop or reverse what is happening to my eyes.

I’m scared. I can still see well enough to paint, and I can use a magnifier to write and edit, but it tires me out easily. I’m also able to take care of my kids, cook, clean, and do laundry.

I’m trying to learn as much as I can, and then I am going to do my best to learn how to do it with little or no eyesight. I suppose that means learning to enjoy audiobooks and trying to be an auditory learner instead of a visual/kinetic learner.

I just hope everything works out so that I can still do my part to support my family financially.

I hope I can.


In my mind’s eye…literally

My youngest is quite needy and super-mobile. I am working out when to be able to work on blogs and my other writing around her needs.

Strangely enough, I’ve found it easier to work on art while I’m taking care of her. I’ve moved into the realm of digital painting. I love it when I can do it.

The irony is that my eyesight has considerably deteriorated over the past year. The central vision in my right eye is completely gone, and my peripheral vision is distorted. It’s better than nothing, I guess, but it gets frustrating when I’m typing on my phone and hit the wrong letters by mistake. I can still type mostly well on my computer because I don’t have to look at the keyboard to know where the keys for each letter are. It’s not perfect, but it’s much easier than doing it on my phone. That being said, I have gotten kind of lazy and enjoy the autocomplete feature on my phone. It saves a lot of time when I’m chasing a very active, curious, and jeopardy-friendly toddler.

My most recent art has been inspired by the spot in my right eye. It occludes my vision when my right eye is open, but when it is shut, I can see some pretty cool stuff in the spot, such as a tree silhouetted against the moon, an eclipse of a blue star, a tree at sunset, a planetary system, and other cool imagery involving a spot in the middle. I try to paint what I see digitally on my phone. It doesn’t always come out the way I’ve seen it, but I really enjoy it. It also makes me feel like I’m taking something that has closed some doors for me and using it to open others.


Pity Party Parenting

I’ll say this bluntly: I hate martyr mommies.

What are martyr mommies?

Good question.

Martyr mommies are the kind of people who use their children’s diagnoses and the challenges they face as a result of those diagnoses to get pity and internet clout.

Parenting is hard. None of us really know what the hell we’re doing no matter how many books we read or classes we attend. Life is random, and our children are people in their own right, not extensions of ourselves.

Can we grieve the expectations we once had based on the diagnoses our children receive? Certainly. It would be strange if we didn’t grieve when our children face unexpected challenges. We all want our kids to stand out in ways that won’t bring them pain we may not know how to help them navigate or manage. We all want our children to have easy, successful lives with minimal effort on our parts. That’s normal, too. That is absolutely, 100% normal.

But the universe is a complex place, God has a sense of humor, and once you think you’ve figured out all of the pitches in the game of life, an unexpected curveball can catch you unaware.

Sometimes it can even be a bean ball.

So you stand there, rubbing your head, wondering what the hell just happened and how you can win the game with a sore noggin. There are two choices here: you can stay put, complaining about how much your head hurts to whoever will listen, or you can go to the bullpen, get evaluated by the team doctor, and strategize with your team to figure out what to do to go forward and win the game.

I’m autistic, and so is my oldest child. We have two completely different flavors of autism. While I excel at reading and writing, I barely limp by in math, eye contact is physically painful, I can’t wear tight clothing or certain materials, and I experience intense sensory overload when I try to drive a vehicle, so I am not a particularly safe driver. Sam, on the other hand, has a gift for mathematics, enjoys leggings and other form-fitting clothes, and doesn’t seem too bothered by eye contact, and she HATES reading and writing. She stims and vocalizes more than I do, but I have had years of conditioning that make it easier for me to remain rigid and still. (Before I had children, I could literally go days without talking if I didn’t have to work, and I didn’t talk when I wasn’t working. Talking is hard for me most days.)

I’ve seen what martyr mommies have to say about their autistic children. With nonverbal children, they seem to assume that because they can’t talk, they don’t understand what’s being said.

And they would be wrong. There are quite a few nonverbal autistic writers, and some of the more famous ones have blogs and social media where they interact with others. They understood what was being said about them, and I have no doubt that nonverbal autistic people pick up on the meaning behind words, even if they don’t understand those words.

One of the biggest things I’ve had to struggle with as an adult is knowing how much of a burden I was on my family. If you ask my parents, they will deny that I was a burden, but I knew I was. I didn’t fit anywhere, I struggled to make friends, I was blunt when I did speak, and my very existence cost my parents money that could have been spent on other things. They already had three children when I came along.

They never said I was a burden, but I knew.

My siblings had to put up with my otherness, too. My youngest older sister once told me, in a moment of intense irritation with with me, that I was a mistake. The story goes that my mother was taking birth control pills and had decided that she wanted a tubal ligation, but when she went to the doctor to see about getting it scheduled, she found out she was pregnant with me. My parents didn’t believe in abortion, so I was born into my family as an unexpected “blessing.” My mom got angry at her for telling me that I was a mistake. She reframed it as a “happy accident,” and she said that none of my siblings were planned, so if I was a mistake, so were all of my siblings–and she didn’t think that any of us were mistakes.

But the feeling still lingered. And logically, I knew that my existence stretched my family’s already too-thin resources.

But I digress.

Suffice it to say that children can tell how you feel about them, even if you don’t put it into words or think you’ve hidden those words in a place where you think those children will never see or hear them.

And now we move on to the next thing: Being a good parent is hard no matter what challenges your child faces.

My oldest is autistic. Does it suck? Yeah, it does. I wanted her life to be easier than mine. I didn’t know I was autistic before she was born; it was two years after her diagnosis before I was diagnosed and so much about my life made sense.

My youngest had GERD so bad she was up practically every hour of the night, throwing up slightly less than what she kept down until she was about nine months old. Did it suck? Hell yes, it did. I was scared that if I couldn’t get her GERD managed, she would end up with a feeding tube or hospitalized. I felt like a failure as a parent. I was also severely sleep-deprived and not a very good parent or partner.

Even after the GERD got managed, she still took a long time to sleep through the night, and that didn’t happen until she was almost a year old. She sometimes wakes up in the wee hours when she’s sick, both other than that, she’s a pretty good sleeper. She’s still prone to bad gas when she has a cold, but we’re doing baby-led weaning, and she’s cheerful in spite of the rough start she had.

And these are just the challenges in my family. I am not sure if my youngest will end up being autistic, but if she is, it will be a very different flavor from me our her sister, because she’s an extremely charismatic, people-oriented child.

But that doesn’t mean there won’t be challenges. I know people who are good parents who have done the best they could have children that have been through rough challenges ranging from cancer to teen pregnancy to substance abuse.

Parenting is hard no matter what life throws at you. Nobody is disputing that. It’s the dwelling in the difficulty that makes things worse.

Sam was completely mute by the time she was two years old. She had started talking at nine months, and then it was all gone. It was that loss of speech and a few other flags that led me to taking her to the Thompson Center in Columbia to be evaluated. Once we knew she was autistic, I worked together with her healthcare team to secure the therapy and tools she needed. I also applied for SSI for her since I had lost my job and felt that I needed to be a hands-on parent to navigate these challenges. I was a single parent living with my brother, my younger older sister, and my nieces and nephew. That family support network was also helpful.

I fought for what my daughter needed, and I did not stop fighting even when she began to make progress.

And she still has a long way to go.

Has it been easy? Nope. I’m not going to elaborate, either, because I don’t need to share what we’ve been through to score internet points. My child doesn’t deserve to be humiliated so I can receive validation.

Instead, I prefer to focus on what our hard work is bringing forward. My oldest daughter’s father, my husband, my daughter’s healthcare team, my daughter’s education team, my daughter, and I all work together (though not all in the same room; that would get pretty crowded) to help my daughter have her best possible future.

I acknowledge that parenting an autistic child is challenging, but I would argue that parenting any child is a challenge. Rather than humiliating our children for sympathy or internet clout, we should focus on the things they can do and do what we can to help them master more. Not every autistic person will be the next Temple Grandin or John Elder Robison (nor should they be), but we parents should seek out and use every resource we can to help our children be all that they can be.


Requiem for a Sewing Machine

I’ve wanted a sewing machine for a while now. It’s one of those things, like a Ninja Foodi or a KitchenAid Stand Mixer, that I’ve put on hold to take care of more pressing financial matters. I definitely want to get my hands on one before school returns to in-person classes, though. Sam will need masks when it does. I also want to learn to use a machine because of the problems I’ve been having with the nerves in my right hand. It makes sewing by hand difficult and often painful.

Looking at sewing machines made me remember the sewing machine my mother had when I was a little girl. I don’t seem to recall her ever using it; it seemed to be in need of a needle or a few small repairs that were pushed aside for other concerns. It was an old (even then) Kenmore sewing machine that was housed in its own two-door wooden cabinet with a fold-out leaf. The cabinet was gorgeous–the wood was beautifully carved and stained walnut, and the pulls for the doors were lovely brass rings mounted on matching hardware. The machine itself was less attractive, but I’m sure it got the job done when it was in working order.

In the meantime, though, the sewing machine cabinet served as a perfectly lovely stage for the productions my sister Rachel and I would put on for our family using our dolls and stuffed animals. We called it “Mount Sinai Theater” (though the spelling of Sinai was so badly mangled that I’ve blocked it from my memory entirely–which was my fault, I must add–phonetically, it sounded very different from its spelling to younger me). While the sewing machine may not have been able to fulfill its intended purpose back then, it enabled us to create some fun memories as a family.

Unfortunately, my mother doesn’t have her sewing machine anymore. After almost 20 years, my parents divorced, and about a couple of years later, my mother married her second husband, and we moved to a new town. While we were waiting for our new home to be ready, someone broke into the trailer where some of our things were being stored and stole Mom’s sewing machine.

…that’s the story we were told, anyway. The more I reflect on what I was told, the more implausible it seems. Only someone who knew the value of an antique Kenmore in the original cabinet would go to all the trouble of stealing such a large and heavy item. I think what really happened is that Mom said or did something that irritated her second husband, and out of spite, he and his friend took her sewing machine and sold it. After being subjected to him for the duration of their marriage and divorce, his true character became abundantly clear.

Unfortunately, I can’t ask him what really happened to my mother’s sewing machine because he died almost 20 years ago. It’s just as well, because I doubt he would admit to any of the cruel things he did to my mother, my sister Rachel, or me.

Meanwhile, though, I sometimes check Craigslist or eBay to look for a familiar walnut cabinet. It’s probably long since been turned firewood and scrap, but nostalgia is a powerful thing.

As for me, I’ve got my eye on a sewing machine that is supposed to be good for first-time sewing machine users. I’m probably going to buy it as soon as the stimulus comes in.


Don’t just do something; stand there

There is very little quite as frustrating as working all day, feeling completely wiped out by bedtime, but still feeling like you didn’t accomplish much.

Most of the work I do is the invisible labor that nobody really values because it doesn’t translate into income for my family. While it saves my family thousands of dollars, it’s considered worthless because it doesn’t bring my family that much closer to being debt-free or buying a house.

During the week, I get up at 5:45 am to get breakfast started. Before COVID, I would also prepare my husband’s lunch and have it ready to go for him. If I’m lucky, our 14-month-old baby doesn’t wake up until breakfast is ready. If I’m not lucky, I check her diaper and put her in her playpen so I can finish making breakfast.

Breakfast is at 6:15 am, more or less. My husband requests oatmeal during the week because it is filling and helps him get through the morning without snacking. Our 12-year-old daughter (Sam) usually wakes up around that time, too. She’s not a fan of oatmeal, but we always have her favorite cereal on hand (plain Cheerios) or sometimes muffins. Our 14-month-old (Nem) is ambivalent about solids, but she sometimes eats oatmeal or cheerios for breakfast.

After breakfast is when good intentions go to die. My husband goes to his office, and I do my best to manage the household in the interim. Sam is autistic and electronics-obsessed, so it’s sometimes hard to find a balance among letting her have non-educational screentime, teaching her essential life skills, and helping her get better at subjects she doesn’t like (and because God has a sense of humor, those subjects are reading and writing). Nem is a very people-oriented child who demands a lot of attention. (I’ve had to stop writing this paragraph four times now to attend to her needs.)

If I’m lucky, I can distract the girls with some Sesame Street and start a load of laundry and put a few dishes in the dishwasher. (I am NEVER buying pans that can’t go in the dishwasher again.) If I’m super-lucky, I can grab a shower.

Nem normally takes a nap after breakfast, and if I didn’t sleep well the night before, I sometimes join her. Other times, I take the opportunity to shower. (It’s hard to get it done when she’s awake and fussing.) Sam is very creative and mostly good at keeping herself out of mischief. Nem is very people-oriented and likes to be near me at all times. She is very charismatic and friendly, and like her sister, she seems utterly fearless. Needless to say, I have my hands full keeping Nem out of mischief.

When lunchtime comes around, I have to find a way to keep Nem amused so I can cook. Sesame Street has done the trick so far. Nem is obsessed with Cookie Monster, and she will happily watch him sing or chase cookies. Her favorite song so far is “Google Bugle.” (She and her sister both really love Fall Out Boy, too.)

After lunch, I try in earnest to get done what I hope to accomplish before my husband’s workday ends. Sometimes Nem takes a second nap, which makes getting those things done easier. Sam helps out, too, as she can.

Once Michael’s workday is done, I do my best to have supper ready. Once again, Sesame Street saves the day if Nem is awake. Sometimes, if nothing on hand seems appealing, we’ll order food. It’s tricky on a tight budget, but we have to make it work, especially when the people who fulfill our grocery order can’t find the things I’ve ordered for our meal plans. Ever since COVID hit, our food expense has more than doubled. It’s frustrating.

After supper, Michael usually plays his favorite video game to unwind. We also watch various shows together before putting Sam to bed. We’re still trying to figure out how to get Nem to go to bed at the same time every night. Given that she was a surprise baby, we had long since filed away the whole “how to get the baby to sleep at a consistent time” thing. Sam thrives on routine and is pretty cooperative as bedtime comes. Frankly, I feel a little spoiled by how well she does with routine. With Nem, it’s trial and error (mostly error, but we’re figuring it out).

Once Nem is down for bed, I finish up what I must do before I go to bed, such as running the dishwasher or handwashing dishes if I don’t have enough for a full load (I am never buying pans that aren’t dishwasher safe again). On a good night, I can get maybe six hours of sleep before the whole cycle starts again.

Weekends are a bit better, and I can get a bit more sleep, but my duties are largely the same. On the plus side, I don’t have to worry about the kids disrupting Michael’s workday by being too noisy.

Anyway, it took me a week to be able to complete this blog. I hope that future blogs are easier to write. I’m slowly finding balance.


Domestic Dungeoneering: Meet the Party

We’ve lived in our current dungeon for a year. Our overall quest is to have the best lives possible. To that end, we want to be able to achieve a number of goals. Chief among those goals are to raise our children to be good people who can live independently as adults and make good choices. We also want to find the work we are meant to do and do it to the best of our abilities. In keeping with the fantasy RPG theme, let me introduce the party:

Michael: Party leader. Michael was a Fighter, but now he is a Druid. His primary mission in life is to help his fellow Fighters adapt to life outside of war. Michael’s experiences with war led to him spending a lot of time in a clinic healing. Many Clerics attempted to cure his wounds, but it was a Druid who was able to get to the heart of what was poisoning him, and Michael was healed. Since then, Michael has been learning the ways of the Druids.

Rebecca: Chief Dungeoneer. Rebecca is a Bard who specializes in Lore. She has worked with Clerics in clinics, but she prefers working from the dungeon, where she can ply her trade while caring for her children.

Sam: Rebecca’s daughter from a previous relationship. Sam has expressed interest in dual-classing as a Druid-Cleric in order to heal cats, but she seems to have a greater talent for being a Bard like her mother. Sam is extremely clever and good at finding loopholes in dungeon rules, which indicates that she has some Rogue qualities as well…or possibly Lawyer qualities. Sam’s father is a Lich, so she may have some innate abilities that would make her a fine Sorcerer.

Nem: Michael and Rebecca’s surprise baby. Nem has a maxed-out charisma score, a deep love of music, and a strong affinity for cats.

The Lord High Goof: Tony is a very large red tuxedo tabby who has an immense amount of energy and nigh-infinite patience with children. Sam is his favorite person, but he occasionally snuggles with Rebecca or Nem. Tony is obsessed with springs and getting Haru to play.

Her Most Noble Floofiness: Haru is a supersize tortoiseshell Ragdoll mix whose hobbies include sleeping and avoiding people when they are awake. Haru’s previous owners had her declawed and fed her indiscriminately, so she is obese. The arthritis in her damaged feet makes it hard for her to play, but she does try sometimes. She sometimes surreptitiously plays with Nem by laying on the back of the couch and tickling Nem’s face with her extremely floofy tail.


Domestic Dungeoneering: A Quest Appears!

I had to uninstall and reinstall WordPress because I accidentally moved or deleted something that should not have been touched at all.

So, after a long time of knowing I needed to do something about the broken website, I finally did something about the broken website.

I’ve also been working on getting some health issues under control. These health issues have interfered with my ability to do more than making sure that my husband and kids are fed and clothed. With the help of some good folks, I am getting into a position to be and do more.

Part of my transition into being the best me possible involves discovering (or possibly rediscovering) things about myself that have been buried under layers of trauma and neglect.

I’ve started reading a book called The Pathfinder because, other than being a mother and a wife, I feel pretty directionless. It’s a neat coincidence that The Pathfinder shares its name with an offshoot of Dungeons and Dragons. I used to play D&D when I had more time and a playgroup.

This is one campaign I’ve got to do on my own, though. Nobody has the answers I hope to find at the end of this quest. I hope to update this blog often as I embark on this personal journey to be both the best mother and wife I can be and do work that does more than earn a paycheck.