Meeting her husband, getting married, and living with medical conditions
When I was 16, my husband and I met in an AOL chat room called Freaks, Geeks, and Losers. I was in Missouri and he was in Iowa. For my 17th birthday, I asked if he could drive down with his family to meet me. Now that’s what everybody does who meets online, right? So we’ve been married 20 years, and our kids are 5, 7, 10, and 12. My husband’s autistic. My oldest is diagnosed as autistic. The other three are all neurodiverse.
My husband’s been hospitalized for depression. He’s seen numerous psychologists and therapists. We’ve asked all of them, how can we get him formally diagnosed as an adult? If you’re under 12, it can be done. The older you are, it’s like, "Well, you’re clearly alive and functional. You must be fine." Ok, we’re fine. But we’d still like to know what’s going on. It seems like they either blow it off entirely or they’re like, "We don’t know. Nobody diagnoses adults." And it would still be useful to see where his strengths and weaknesses are. But there’s little support for adult male autistics. There’s virtually none for adult female autistics because they’re so good at masking. So to get anyone to take him seriously is pretty hard.
I do worry about my daughter too. My oldest one we had tested, and the doctors won’t diagnose her. I talk to adult women with autism, and they tell me, "That was me at her age." And there are certain accommodations my daughter could get if she had the diagnosis, like an IEP and other resources. And for my husband, he’d get protected under the ADA. Plus, it would just help for me to be a better spouse. Everything I’ve learned with him is through trial and error. Like, I can’t talk to him in a crowded room because he has no filter, I can’t hint things to him, I have to be very straightforward. We’ve been married 20 years, and sometimes he’s still not really sure if I’m telling him what I mean. He’ll say, "That’s neurotypical BS," and I’ll say, "No, I try to say what I really mean, otherwise you’re not gonna get it."
COVID impact on her family
My husband burned out on COVID and quit his corporate job. I was able to find a home job. It sucked. I could threaten to leave, but it was like, "Go ahead. There are literally 200 people who sent in applications behind you to take your position." So I did what I needed it to do. The goal was to get the kids in school so I could work full-time. Now my husband’s started working for the school district, and he’s managed to use his autism as a strength because he can relate to some of the other kids. I’m going to be starting a new job at the same school district, different
buildings, as school support staff. I’m a little worried if we happen to go virtual again, just coordinating the kids’ schedules. But I think my husband will be virtual and I probably won’t. We’ll figure it out. When the kids were virtually learning, it worked well for my oldest. My girls got depressed. And my youngest, I continued to send to preschool since he went to the early childhood center. I was worried about him losing the skills he’d been learning because he got occupational therapy and speech twice a week. So this year, they’re all going back in person.
The glue that holds family together
I take care of my family and nobody takes care of me. It sucks. But what are you gonna do? With my husband’s health issues and having four kids, I don’t have the choice to not be okay. I rely on my mom for support. She’s in Iowa. I’m on the phone with her every day. We talk about whatever. I’m one of those people who will call just to say, "Oh, I found an interesting bug. I’ll call you later!" We’ve always been close. And once I had kids, I needed someone to lean on. The nice thing is, she and my dad are both retired. I can call her whenever I need to. When my husband left his job, I was gonna be the primary breadwinner for a while, and that was scary. I’ve been a stay-at-home mom for a good 11 and a half years. Then my husband was like, "Hey, the $75,000 a year job with the health insurance benefits — I’m not gonna have anymore." Everybody was fine with the transition except me. But, again, what was I gonna do? Kids have gotta eat.
Honestly, the closest thing I do for myself is donate plasma twice a week for emergency backup money. I love it because it’s 45 minutes of quiet, and I get to read. That’s my self-care. My therapist will tell me it’s not. But it works for me. You pay me to sit and be quiet and read. I love you guys!
What is public health, and how could funds be spent to improve it?
Public health is maintaining the overall behavioral and mental wellbeing of the populous. We’re all in it together. To place it all on an individual, in a country where a trip to the ER is gonna land you a $20,000 hospital bill, you can’t put that on one person. Thankfully, my family and I have always had insurance. But I have friends who’ve got no coverage. And we can’t put it all on them to never get the COVID virus or never be in an accident.
We need more free or extremely discounted doctors, surgeons, and dentists. We’re facing a large homeless crisis going on right now. It’s been visible enough that the kids were asking to help. We went to make peanut butter and jelly sandwiches on Thursday night, and my oldest and I went to distribute them on Saturday. I think I’m doing something right when they come to me saying, "How can we help?"
How would you describe the role of addressing social determinants of health?
Those doing the most awesome work are the absolute grassroots projects like Uzazi Village in Downtown Kansas City run by Mama Hakimi. She was the assistant midwife for my youngest. She’s working to decrease neonatal death rates specifically in women of color. I believe in Jackson County, a woman of color is two and a half times more likely to have their baby die in childbirth because of disparities in healthcare. One of the things I remember her telling me was how a university spent $80,000 on some study and came to talk to her about it. She was like,
"Do you have any idea what I could have done with that money, how many babies I could have saved, How many doulas I could have trained?"
Mama Hakimi’s been running this organization for seven years. It started as community-based maternity care that provided help and education. I try to drop off diapers to them when I’m in the area. If I ever win the lottery, I’d set up an endowment for them. Having my own kids makes me passionate about that organization. My first pregnancy and childbirth went okay, but when I had my second son, I started to look at options of other supports and learned about these awful disparities we have in this country. It’s already not good, and then it’s even worse off for somebody who’s a person of color.