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.

Excerpt From Jan. 17 Newsletter

Here’s an excerpt from my latest newsletter. Please subscribe, folks!

It’s January Jersey. Which means the sky is a greige color that all the designers are putting on their walls.

I know all about griege, because we’re in the middle of a painting project at home. Between being grounded in the house with various medical testing for Ian and a dull spot in between writing projects, I have some time on my hand. I decided that it was time to rent a steamer from Home Depot and tackle the last two rooms in our home that still had the previous owner’s wallpaper on the walls.

So, our bedroom furniture is covered with plastic tarps, and my office is inhospitable, until we can finish the job. When we embarked on this plan, I expected to finish off in a week or two. In reality, we are still a month of weekends away from applying any paint — griege or otherwise – on the walls. 

I have a writing topic on hold. The topic is all approved by an editor, but we’re just waiting for one of the presidential candidates to bring up a specific education topic. The candidate is not cooperating, so I’ve done a little background research and am just waiting. And catching up with my other job, which is housewifery. 

I never planned on being a stay at home parent, who works gigs on the side. I planned on having a prestigious job in the university or a policy think tank. That’s why I wasted most of my twenties in graduate school and finished the PhD. But here am I. Drinking rosé with the soccer moms and spinning away the muffin tops on Monday mornings. 

On most days, that’s just fine. I have time to paint walls, check in on my mom, make sure the college kid has filled out the right forms for next year’s dorm assignments, attend IEP meetings, talk with the lawyer about the guardianship papers, and arrange appointments with a contractor who has to fix the hole in the foundation by the garage. 

Other days, I get impatient with my situation. Freelancers don’t get the choice assignments or get paid very well. I miss teaching college classes, even six years later; though I don’t miss grading papers, which always sucked. I miss the identity of a full time job. 

As a neurotic progressive, I also feel guilty. Others don’t have the option to have a flexible job. I’m able to support my kids, both the special ed and the typical one, so they’re two steps ahead of kids who don’t have a parent like me. Which is totally unfair. In a world that is falling apart, I’m staring at Benjamin Moore paint colors so long that I have actual opinions on Grey Owl grey versus Metropolitan grey. I should be out there in the thick of things, making changes, instead of looking at Pinterest boards. 

I handle the guilt by writing. Writing is a source of guilt, too, because writing is becoming more and more of a rich person’s game; there are fewer and fewer traditional journalism jobs. But it is an effective soap box. I also join local political organizations and progressive parents groups. 

There is a growing parental political movement happening. Parents — okay, mostly women — are showing up at board of ed meetings and state house protests. They’re forming letter writing committees. They’re organizing fundraisers for political candidates. Not all of them are progressive, of course. One group of parents in New Jersey just pushed back against a new vaccination law. Other groups are too focused on changes in our own privileged town, and aren’t advocating for all kids. But there are other parent groups that line up more with my political leanings. 

This situation isn’t getting a lot of attention from the press, because most journalists have full time jobs in the cities. Even the education reporters aren’t showing up to Board of Ed meetings. I am. And so, weirdly enough, being a stay at home parent gives me a professional advantage. Life is funny that way. 

So, on this greige day, I’m working and not working at the same time. At noon, I’ve got a date with Lauren at the hair salon who will make my hair a more uniform red and give me a good Jersey blowout. And we’ll talk. She’ll tell me about her mixed race family and her husband’s contracting hustles. We’ll talk about her middle school son and his struggles in school. I’ll walk out of the salon with sleek red hair and some fodder for half a dozen articles. 

At some point, I’ll figure out how to make more money from all this working and not working, but that’s for another day. 

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. 

2020! Bang!

Well, the new year is opening up to a continent up in flames, a potential world war with an unstable country, and personal chaos here at Apt. 11D.

In late November, Ian had a little seizure. He drooped out of a chair right in front of me. It lasted only a couple of seconds, but it was alarming. I called doctors, and the tests started.

The weekend, he had a 48-hour EEG test. I picked him up from school on Friday afternoon and took him to the neurologist’s office. The technician wired his head up with about two dozen electrodes that were glued to his head. Then she covered it up with gauze. He said he looked like a nun. The wired snaked down his back and connected with an satchel that recorded his brain waves.

We also got a camera with a small tripod that recorded him all day. He carried the camera from room to room setting it up on nearby desks and tables. At night, he switched that camera to infrared mode, so even his sleep was recorded.

Because we were grounded for the weekend, I decided to tackle some big chores. We rented a steamer from Home Depot, and Steve, Jonah, and I stripped wallpaper from the office and our bedroom. It’s going to take another couple weekends to finish stripping, spackling, and painting, so I’m living in a construction zone right now. My office has been temporarily moved to a family room. I hope I can concentrate in a new space.

Yesterday, I dropped off the equipment at the office. I didn’t expect to hear from the doctor to the end of the week. Because he hasn’t had any other incidents, I believed that we were going to get a shrug from the doctor. I really thought that she was going to tell us that that this was a one-time thing and not to worry.

But then the office called me at 4:00 and asked if we could get there at 5:15. I did 10,000 steps just pacing around my living room.

Short story. He has epilepsy. And we have to do an MRI in a couple of weeks to rule out a tumor.

I just took on a quickie writing project to distract me for the next week. I’ll be back here, but blogging will have to take a backseat to home and work priorities until we sort things out. My life is a construction zone right now.