Bedroom Reno

It’s Girlie Friday, so let me show you the before-and-after of our quickie bedroom redo. Basically, we just pulled the wallpaper down. I got a $150 headboard on Wayfair and a new duvet cover at Pottery Barn. We put in a new light fixture. That was it.

I know I still need more art on the walls, but I usually take forever to figure out what’s going to go where. Art will happen eventually.

The first picture is the real estate picture from the original owner. We just dumped our stuff in the room seven years ago and then really did nothing. The furniture are mostly hand-me-downs from dead people; the chair and side table are new.

When People Stop Caring

For the past couple of days, we’ve had some serious health issues to contend with here at Apt. 11D. It would be in bad taste to talk publicly about those issues, beyond some notices in the comment section for regulars, but let’s just say that those problems have been all consuming.

Iowa, the State of the Union, and the impeachment verdict have gotten only cursory attention from myself. When I haven’t been busy with doctors, I’ve been anesthesizing my brain with romance novels, gossip blogs, and dark chocolate. If someone like me — an over-educated news junkie — isn’t paying attention, that’s bad news. It means that nobody else is paying attention.

Part of the hubris of any blogger or political pundit or hyper-tweeter is that they feel that they can make a difference through their words, no matter how small and insignificant their blog may be. We all think we can change the world, and that’s why we do it. If I’m feeling powerless, that’s bad news. It means that the ordinary people don’t feel like they matter.

Only 172,000 people showed up to vote in Iowa, after a year of hard work and money by over a dozen candidates. And that was before the counting fiasco. How many people will bother to vote next time?

Compared to other political moments, like the Kavanaugh hearings, the impeachment hearings didn’t attract many viewers. Maybe because the outcome was obvious. There was no drama.

Random thought: Would John McCain have made a difference?

All this is important. We have an unhinged president who is running our country like he’s at the wheel of the white SUV with OJ Simpson along an LA highway. He’s reckless, stupid, and selfish. He doesn’t obey the unwritten laws that have kept politicians in check in our country for two centuries, never mind the written laws. I fear that our nation will never recover.

The worst tragedy is what happens when people stop paying attention. When people like me get caught up in our personal lives — no matter how serious and real — and don’t turn on the television, stop tweeting, stop writing, then that’s when democracy dies. Yes, the world keeps spinning. Yes, our problems are real. But those problems will only get worse, if our political system goes to hell and stops doing the little that it already does for our most vulnerable.

So, I’m shaking myself out of my personal crisis and getting back to business.

Brains

When Ian had the 48-hour EEG, they found that he was having one-second seizures every two hours. They were so small that there were unnoticeable to observers. He doesn’t even blink when they happen. Those little seizures have to be treated with medication, because without treatment, they start adding up to bigger ones, like happened in November. 

The concern was that his seizures were happening on both sides of the brain. Most people with epilepsy tend to get them on one side or the other. So, that’s why the neurologist ordered the brain MRI and was worried. 

Epilepsy is a very common problem for people with autism. Something like 30-50 percent of people with autism, also end up with epilepsy down the road. It’s a genetic thing. Just the same, it was necessary to rule out a physical issue, since his EEG readings were so unusual. 

It took four days to get the results, in which time I imagined the worst. I didn’t want to be blindsided like I was last month with the epilepsy diagnosis. I wanted to imagine the worst, make peace with it, before walking into the doctor’s office. 

He’s fine.

I feel like I’ve had a seizure. My brain is wiped clean. I haven’t even been answering email this week. I’ll be back on Monday. I’m working on article today and that’s about all I can handle.

The pain and stress that parents of truly sick kids have to manage is unthinkable. My thoughts are with them this morning. 

Hug (or call) a loved one today.

DIY College

This is the first day in over a month, when I’m the only person in the house. No in-laws, husband, teen, or a college kid needing three meals a day. It takes a big block of time to get serious work done. An hour here and there don’t add up to many words. I’m relishing this moment and making plans for myself for this spring.

My chore chart isn’t completely clean. We have to start the paperwork to assume guardianship of Ian. I have to sign him up for ACT and SAT testing. We need some repairs on the exterior of the house. I already got one quote and am having heart failure about that number. I also am helping Jonah out with some college stuff.

When we sent Jonah off to college two and half years ago, Steve and I thought we were done with parenting. We assumed his college experience was going to be like ours. Our parents hauled our stuff to the college and then really had nothing to do with us until Christmas break. They checked in every three days, but that was about it.

Yeah, that was an error. Jonah ended up needing a lot more help, because the college was massive with so little oversight over the kids that he got a bit lost that first semester. So, we readjusted our approach to him and now we’re more hands on.

Just for an example, let’s talk about housing. His college doesn’t have enough dorms for all its students. In his freshman year, he lived in dorms that hadn’t been renovated in decades. There was no air conditioning, so he couldn’t sleep for two weeks during a late fall heatwave. So, like most sophomores he moved to an off-campus slum.

This slum creates all sorts of hassles for Jonah. Jonah got stuck being the guy who was responsible for the electricity and internet bills. He had to shake down the other five roommates every month to pay the bills. Time suck. They had a guy who somehow ended up living on their sofa all last year without paying rent. This year, they made him take an official room, when someone moved out, but the sofa kid stopping paying rent. So, the landlord made them evict him yesterday. Meetings, phone calls, time suck.

The toilet broke last year. The kids had to jiggle the handle to make the water stop running. They told the landlord, and he did nothing. Then they went away for the summer. The last kid who used the toilet didn’t jiggle the handle, so the water ran in the toilet all summer. The landlord wants them to pay the $2,000 water bill. They’re fighting it. Time suck.

As un upperclassman, he has a chance of getting a good number in the school lottery to get better housing next year. It’s a great building with A/C, wifi, study lounges, and exercise room, but the guys that he was going to live with can’t afford the 10K per year cost, so they want to find another slum. Looking at housing = time suck.

Housing is such an issue at his school that private developers have stepped in to build dorms around the college. A new place is opening in the fall, but it’s going cost too much for his frugal friends.

I spent some time looking at this private dorm. (Here it is.) I was kinda surprised that colleges were working with private developers to make their dorms for them now. It’s a pain for the students, because it’s a full year lease, and students don’t have any support from the school, if one of their roommates flakes out. If Jonah does the spring semester abroad, then he’ll have to find a replacement for himself. (Time suck.)

I guess these private developer-college arrangements are more common. My cousin’s kid in Floria lives in one of those dorms. I might spend the morning asking around about them.

The other big Jonah job for the week is help him with a summer internship. More on that later.

OPINION: Marching band sets the right tempo for many special-needs kids

With plumed caps and braided epaulets for miles, marching bands are a staple of the high school football game. Students stride purposefully around the field with piccolos and tubas, and synchronize their steps to Billy Joel medleys, homages to Mary Poppins and even a snappy march or two from John Philip Sousa. Girls in flared skirts and knee-high boots triumphantly wave flags or twirl wooden rifles. 

In some ways, marching bands are anachronistic today. The frozen smiles and stiff-legged choreography of these bands harken back to a 1940s Esther Williams technicolor movie. The twirling rifles feel vaguely sinister in this post-Sandy Hook era. Yet they hold a certain magic, too — a place of innocence and sincerity not found elsewhere in the dystopian world of the modern American high school. They hold a different kind of magic for the kids who participate in this activity.

Along with the A/V club and the stage crew, marching bands have long been safe places for kids like the socially awkward girl, Michelle, from the 1999 cult flick American Pie, who annoys everyone with tales about band camp. The typical participant is not a super star on the football field or in student government. 

Marching bands also draw in kids with various learning differences, including those with high-functioning autism. For these students, marching band is an activity in which they can participate with peers. With its unique combination of exercise, dance, music and rigor, it also may be a place where they heal.

More here.

Having It All, Means Having No Sleep

Helaine Olen writes a great column about Ada Calhoun’s new book, Why We Can’t Sleep: Women’s New Midlife Crisis.

…Calhoun’s subject is exhaustion and anxiety, experienced by all too many women who were brought up in the 1970s and 1980s to believe we could somehow “have it all” — domestic harmony and perfection, children and fulfilling, lucrative work that mattered.

It turns out that promise was a fairy tale for the early years of feminism’s second wave. But, as Calhoun recounts, the myth was accompanied by a simultaneous ratcheting up of expectations placed on women, even as government and societal support crumbled. Parenting turned into a vocation, with the result that, even as the number of mothers with jobs has swelled over the decades, mothers of today spend more time with their children than the mothers of 50 years ago. The millions of Gen X women who have given birth in their 30s and 40s have found themselves confronted by the double whammy of needing to care for those children — as the cost of child care has surged — while also caring for older parents. (Let me note here that men, on the other hand, rarely fall for the tripe that they can do it all. Gen Xer Beto O’Rourke claimed his wife, Amy, raised their children “sometimes with my help,” while Andrew Yang, of the same generation, routinely references his wife, Evelyn, “who’s at home with our two boys.”)

My Fitbit measures my sleep. I have never scored higher than a “fair.” Usually, I get a poor. Partially, it’s due to hormones. But when I’m wake up at 2:00am, I find that I’m thinking about the chore list. I’m making lists in my sleep.

I do a lot. I’ve got a various writing projects — some for fun, some for money, some for promotion. I’m managing kids’ issues. Even the college kid still comes with responsibilities, because college has way fewer supports than in the past. It’s terrible to think of our loved ones as ticking time bombs, but our parents will need more help soon.

As Helaine’s article sort of points out, some of this is our fault. Do we really need to putting so much time into parenting? Do we really need cool, but poorly compensated jobs? Why can’t we just admit that we can’t “have it all” and make some compromises?

I still do “want it all” though. I’m not ready to give up yet. So, after an hour of sponging off wallpaper glue off the office walls, mapping out the weekend schedule, and signing up the younger kid for a sports program, I’m heading to the coffee shop to work for a while. All with about five hours of sleep.

Lucky: Excerpt From January 7, 2020 Newsletter

Here’s an excerpt from the last newsletter. (Subscribe, folks!)

January 7, 2020

The new decade has started with a bang here at Apt. 11D. Of course, we don’t actually live in Apt. 11D anymore. We live in an undisclosed location now after learning a while back that one shouldn’t actually name one’s blog after a real life address. Apt. 11D is more of a metaphorical home. But that’s neither here nor there. Let’s just say that things are pretty crazy at home. 

My younger son was diagnosed with epilepsy yesterday after suffering a mild seizure last November. I wrote about the details about the first incident and how we found out the news on the blog. You can read it about it there, if you like. 

Today, I just want to say how fortunate we are. That sounds crazy, right? My poor kid is saddled with autism and epilepsy. He’ll have to take medication for the rest of his life. We’ll be going to more doctor’s appointments and managing medication. Bad news for all, right? 

Well, yes, of course that is true. Ian has handled this news with grace and dignity, and we love him hugely. There’s no doubt that this diagnosis is an added burden on his already complicated life.

At the same time, we know that we’re lucky, because Steve and I can handle our end of the burden without losing our heads. I have a flexible job and work from home. We’re not dependent on my salary to pay the mortgage, so I could stop work entirely for a year to concentrate on Ian’s troubles, if necessary.

Fifteen years ago, when Ian missed the “speaking in full sentences” milestone at age 2, we entered into the world of parenting “kids who don’t fit into neat boxes.” In a yahoo chat group, I asked other parents like me, “how does anybody without an education and time deal with all this stuff?!” It was so overwhelming at that time. Another mom responded, “yes, it’s horrible, but you can’t think about others right now. You have too much on your plate. Just deal with your own problems.” 

So, I can deal with this hurdle. I can give myself the time to process this information and keep myself mentally healthy. I can read up on the latest treatments for epilepsy. I can schedule doctor’s appointments without losing a job. I can manage my other responsibility at home — making sure my college kid has his head on straight, keeping everyone dressed and fed, making sure that the house is repaired and sturdy. I can even maintain my writing job by taking on projects with longer deadlines. 

I am lucky.

Yet, it is still possible to think about the bigger picture. While taking care of our own situation, I can also manage to advocate for those who are struggling to educate and care for family members with disabilities. Those parents, my counterparts in the Bronx and Newark, are always my people. My votes, my political commentary, any power that I have as a writer on the national stage, is always with them in mind.