Category: Autism

Check Out the Brain on Her!

I was born with Dandy Walker syndrome, which is a malformation in the back of the brain near the brainstem. The malformation occurs in the part of the brain (the cerebellum, fourth ventricle) that controls balance, coordination, fine motor skills, vision, and cognitive thinking. While pregnant with me, Mom was simply told that part of my brain didn’t develop and that was it. Granted, DWS isn’t common, so a lot of doctors, especially back then, hadn’t heard of it.

Now, more and more doctors and medical staff I’ve seen are at least familiar with it. One doctor even said, “So, you’re aware DWS affects your liver and kidneys?” Huh? Yeah…sure, I know. (Nope. I didn’t know.) I guess that explains the hydronephrosis, nonalcoholic liver cirrhosis, and diabetes type 1.5, the latter two of which are autoimmune diseases.

I didn’t walk until I was 2, and I was in physical therapy to help with that, but I don’t remember it. We didn’t learn I had DWS until I was 17 and my pediatrician ordered a head CT scan to see why I was having headaches all the time. Fortunately, I only have a small amount of hydrocephalus, so I don’t require a VP shunt.

I also had crossed eyes, which were surgically corrected at 18 months old, and a strawberry birthmark – a hemangioma – up from my forehead a little past the start of my hairline. My brother took care of my birthmark one night when he dropped a toy stove from the top bunkbed onto my head, which I had poked out from my bunkbed to ask him what he had said. He had, in fact, told me to watch out because he was dropping the toy from his bed and he didn’t want to hit me with it. I find this hilarious; even more so when he would tell the story. I don’t remember that, either, but I was under 5 at the time.

So, all of that to say, I have some limitations. With DWS and AuDHD, I think differently and perceive things differently and I have some problems with critical thinking, and my depth perception isn’t the greatest. I also have diplopia, which is double vision. I’ve had 3 eye surgeries and the surgeon informed me that it’s my brain mucking things up because they can’t get my eyes any straighter than they are. I must sound like a monster 😂.

My husband, Adam, didn’t know any of the above when we met in high school or when we started dating 9 years later, as my medical diagnoses are not something I openly talk about. My family is very open with each other about their health issues except when they pertain to one’s mental state, which is odd because depression and bipolar are big on the maternal side of my family. Mom’s explanation for my personality and behavior was, “Oh, that’s just Cari,” and family’s like, “Oh, okay.” I love that my family is so accepting.

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My Breakdown Led to a Breakthrough

I finally got around to asking my husband to go to his brother’s for a week, and it went as expected. He got upset and tried to spend one day ignoring me so he wouldn’t bother me, but that was awkward and annoying. Things came to a head when I decided to do something that I had been asking him to do for months, which pissed me off because I don’t ask him to do much since I’m pretty stubborn and determined when I make up my mind to do something and I work at it tirelessly before admitting defeat. He decided to go to his sister’s since his brother lives a couple of hours away and his sister is about five minutes away.

Best. Thing. Ever.

For the first time in years, I had the house to myself. No annoying phone noises. No disgusting smell of way-too-strong coffee. Nothing being put away wherever. It was bliss. I work worked. I house worked. I got hurt a few times, which is totally okay to me, although I could have gone without getting both hands full of broken fiberglass. My body started relaxing, so I wasn’t in constant pain like I had been for months. I could get deep breaths. Obviously, I don’t handle stress well. My husband came by and took the week’s trash out but I was sleeping. We talked daily via text, and since I have issues communicating how I feel and what I want or need, I invited him to read my blog, which he did.

I think he finally started to understand what I’ve been going through and how stressed I have been. He told his mom not to do the dishes anymore, and he changed her phone settings so it’s not making a noise for every notification. I sent him some autism websites, one focusing on meltdowns, which he found informative and helpful. Most of the time, I can’t/won’t talk to him about my ASD issues (symptoms?) and struggles without feeling extreme shame and embarrassment and major impostor syndrome.

Somewhere in the midst of my week of solitude, I decided to begin the keto diet, and I want to convert Mom’s closet into a sensory room. I am excited about both projects, although I am having a bit of trouble with each of them. More on those two topics later!

She’s an Impostah!

I’m unpacking and learning so much about myself and “my” autism that it would be nearly impossible to not suffer from impostor syndrome. For the uninitiated, impostor syndrome is when “an individual doubts their skills, talents, or accomplishments and has a persistent internalized fear of being exposed as a fraud.” It’s most common in those who are insecure and have low self-esteem, which isn’t surprising.

The perfect example presented itself today. One of my higher-ups and I were on the phone talking about new accounts (point for talking on the phone!), which included a lot of new information and instructions – of course, I zoned out more than once – and before hanging up, she wanted to know if I was interested in doing QA (quality assurance) for all accounts.

Now, I’m good at my job, as most of it is spelling/grammar and medical stuff. I consistently get 100% accuracy at both companies I’m contracted with, and I’ve been in the field since 2006. However, every time I receive my QA emails, I am 100% certain that QA just missed my mistakes and that is why I got good results. It’s merely fact for me now.

I’ve done QA before with another company several years ago, but with so many hospitals and healthcare facilities outsourcing our medical records to India, accounts are harder to find, and if you screw up on their sometimes-ridiculous account specifics, they have no issue going to another company. As QA, I would have every account under me including the new one. Since I work nights, I would be the only QA’er available. No pressure, right?

Anyway, my post wasn’t supposed to be about work today. I’ve been sharing ASD information with my husband to help explain myself and actions, and he’s been so sweet and receptive, but I feel like I am just making excuses for my behavior and want a pass to do this or that. Meltdowns are one thing I feel like that about. I’ve had them forever but they were always labeled as temper tantrums, pouting, bipolar (which I don’t have), and acting immaturely.

When I get overwhelmed, I get extremely irritable and want to retreat immediately. If I’m doing something and not getting the expected results, I get physical with whatever I’m doing. Like, if I can’t get medicine open and have tried for a while, I’ll chuck it across the room. I’ll hit things, be aggressive with things, and so on. I mask a lot during these meltdowns because they upset my husband. Holding back results in me shaking, not speaking, and crying out of anger/frustration. I think that’s a big reason I finally broke and requested a week to myself. When I don’t throw something or hit something and hold it in, I cry. Sometimes I do both. I never, ever hit people or animals, so there’s that.

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“I Want to be Left Alone”

Like Greta Garbo, I’m quite content to be left alone. I’ve never been one to seek out attention, though sometimes I would be affectionate with Mom, and I will go to my husband for a hug occasionally, but I’m good being left to my own devices for the most part. Of course, “my own devices” include my phone and/or computer, and I would probably go crazy without some connection to the outside world or something to stimulate my brain.

I am a loner, but that wasn’t always an option growing up. I grew up in a very close family, and we would spend most weekends at my maternal grandparents’. At least 4 out of 5 of “the children” (my mom, aunts, and uncle) and their spouses would be there with their children (“the grandchildren,”) which included my brother, me, and our seven cousins.

I’m the second youngest, but when everyone was outside playing, I preferred to be inside with the adults. If the adults wanted to talk about grownup things or play card games I had no interest in, I would retreat to one of the bedrooms and read or write, or roller-skate in the basement. “She just likes being alone” was uttered often by Mom. Mom was asked a lot of questions regarding me. I wasn’t diagnosed AuDHD until after she passed, so was often described as being a loner and “backward.” Ah, the ’90s.

I need to learn how to shorten my backstories! All of the above brings me to today’s topic. My husband is outgoing and pretty clingy. Him taking care of Mom and staying in the hospital with her screwed up his lungs to the point of him not being able to work. He also has schizoaffective disorder. He’s here 24/7.

MIL came here in 2021 after having part of her foot removed and she is here 24/7 as well. She doesn’t have a vehicle. Mechanic broke Mom’s car, so we don’t have a car. We are all here, together, 24/7/365. I have no alone time.

Okay, now I’m done with the backstory. I’ve been cleaning out Mom’s walk-in closet, and I decided I want to make it a “me” space for…whatever. I’m working on Mom’s bathroom and making it a relaxing space for me, but that only lasts for however long I’m in the shower because, realistically, what else is there to do in the bathroom? I can’t stay in the shower or tub all the time because I’d get all pruny and run up the water bill, which has already gone up due to inflation and having 3 people in the home. I’ve actually been looking for a huge beanbag couch/chair to put in/over the garden tub so I could sit in there and read, but they are hard to find unless I spent $200 for one.

My first idea was to move my computer, desk, and TV/monitor into the closet and work in there, but my husband doesn’t think I would like that and would soon change my mind and move everything back out (which I probably would, in time), as I’m known to do that. Now, I’m thinking of doing a built-in bench seat with some pillows or cushions, and I would really love a beanbag chair since I’ve always wanted one and never got one. I haven’t decided if I’m going to try to add an outlet in the closet or just get another surge protector with multiple outlets and a longer cord to put in there. I kind of want to add an outlet to see if I can do it. Admittedly, that kind of thinking is how a lot of my big oopsies start out 😒.

Not to sound like a bad mom, but I’m looking forward to being able to shut the door when the cats are overwhelming me. You’d think small, cute animals wouldn’t get on my nerves, but just a few days ago, I was preparing to give Phin some shrimp, which he loves, and I had four cats on the dining room table walking around and smelling everything. It was extremely frustrating because only Phin and Piper will eat shrimp, yet four of five just had to know what I had and re-confirm that they didn’t like it. I was pretty cranky after that.

I used to have to hide in my room from my sweet, dearly departed tuxedo cat, Sprinkles Ricardo Blah-Blah, whenever Mom bought me beef jerky because he adored it and would eat it all up from me if I let him. That stuff’s expensive, and it is one of my favorite snacks. Sprinkles would come running whenever he heard the thick plastic bag rustle, even when Mom would sneak it to me!

No More Birthdays

I have anxiety. Bad. I get super anxious hearing other people talk on the phone. My husband makes all calls unless I absolutely have to talk to someone, like for my work. He even has permission to talk to our family doctor and psychiatrist for me. All of that to say, I don’t talk to family on the phone. I always got updated about family by Mom, who would talk to various family members throughout the week. Since I lived with her, I was kept in the loop. All that changed after she died. Family hung around for maybe the first year or two, but then radio silence on both our parts, save a FB group chat with some of my cousins and me.

Around the beginning of April in 2019, one of my aunts called me. She is Mom’s sister-in-law (aka “sister-in-love”), and Mom made her medical power of attorney before she died so my brother and I wouldn’t have to make hard decisions. She, of course, consulted us before making any decisions. I just love this aunt to pieces.

Anyway, my aunt called me and asked if my husband was home, and she wanted me to go to the same room as him. I did so, internally starting to panic. I begged her to please talk to him, I didn’t want to hear what she had to say. By this time, my husband was standing by me, obviously concerned. He caught me when my world fell apart once more.

My big brother (“Bub”), my childhood torturer and hero and only sibling, had a heart attack at work and was found unresponsive. He was taken to Johns Hopkins, where they did all they could, running tests and trying to normalize his temperature and checking for brain activity. He had just turned 39 the month prior.

Since Mom’s car was on the fritz and my husband didn’t think it would make it that far without issues, my cousin was going to take us over the weekend, but Bub didn’t last that long. He left behind an amazing wife and two beautiful, sweet daughters.

A couple of days before they turned the machines off, my sister-in-law called and put the phone to Bub’s ear so I could tell him goodbye. I mostly blubbered and told him I was sorry and that I loved him. He died 9 days before Mom’s death anniversary, 19 days before my birthday. I don’t celebrate my birthday anymore.

I rolled back the time and have been 29 years old for a few years. Everyone started dying after I turned 30. I lost my aunt and my dad the year I turned 30. Dad was a deadbeat, and that drama/trauma is a whole ‘nother story (complete with an Evil Stepmother). I lost Sprinkles, Mom, Ashes, and Soxers all in one year, and two uncles who were surrogate fathers. I’m just done.

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