Monthly Archives: October 2020

Watching grown children set off on their lives is a poignant pleasure

Uncategorized

“Your children are not your children. They are the sons and daughters of Life’s longing for itself…You are the bows from which your children as living arrows are sent forth. The archer sees the mark upon the path of the infinite, and He bends you with His might that His arrows may go swift and far.”

—Kahlil Gibran from “The Prophet”

The first half of this year found our family reconvened in Akron for the better part of four months. We hadn’t all been together for that long since my eldest son, Claude, graduated from high school in 2012.

Yes, it was stressful as everything had suddenly changed due to COVID and we slowly realized that life as we had just lived it would not return anytime soon, if ever. But also, many nights we crowded around the dinner table, eating and playing raucous rounds of euchre.

A week after he returned from college, my second son, Hugo, adopted an English pointer-mixed puppy with liver-colored ears supple enough for a thumb-sucking baby to stroke. Ceaselessly friendly to dogs and humans alike, Rutabaga is a star wherever she trots.

For 90-plus mornings, Hugo and I took our pack, Ruti and my three dogs, for hourlong walks. While the dogs chased squirrels and each other, Hugo and I talked. Some topics were important, like relationships and politics, others were quotidian, such as recipes or the many shows we, along with the rest of the world, were streaming.

Then summer came.

In June, Hugo and his girlfriend, Claudia, took several weeks, and their pandemic puppy, on a camping trip to the Pacific Ocean and back. Everyone sorely missed Rutabaga.

That same month, my third son, Jules, my two littles, Leif and Lyra, and I moved into my stepparents’ camper, which they had set up in their driveway in northern Michigan. Jules, for the second summer in a row, worked at a shop in town during peak tourist season.

Leif and Lyra went to an outdoor day camp that followed COVID safety protocols. Each day they played with other children and spent two hours on Lake Michigan’s shores (Lyra was a platinum blonde by summer’s end). I blissfully worked without children around and, after I picked up the kiddos, cooked dinner for everyone.

Then, in early August, Claude left for graduate school at Texas A&M. A week after returning from Michigan, Jules moved to his first apartment. He’s living with friends in Columbus, where he’s a sophomore at Ohio State.

Once back from his road trip, Hugo began searching for work in his field, which, due to the pandemic, feels like a hunt for a miracle.

Claudia, who is in her final year of her master’s program at Tufts University, quickly decided that with all-remote classes, she might as well sublet her Boston apartment and stay with Hugo.

“Your son is your son until he takes a wife, your daughter’s your daughter the rest of your life.”

During the decade when I popped out a son roughly every three years, that aphorism stung me. I raised my children to be close to one another and, hopefully, to me.

Last month, Claudia’s parents, who are realtors in Rockford, Illinois, offered her and Hugo a house that they own, rent free. The two quickly decided to accept the generous offer.

And so, for the first time in nearly 27 years, none of my three big boys will live in the same town as me. Sure, Claude and Jules will be home on semester break from Thanksgiving until January, but none truly live here and I don’t know that any will again.

The job of parents is to raise self-sufficient, independent adults. My generation, the helicopter-parent generation, too often fails at this. Successful parenting includes supportively watching your children set off on their own paths, even if they end up far from home.

I counsel myself that it’s not the same as when I, as a young adult, wandered in a world before laptops or cellphones existed. Claude, now deep in the heart of Texas, easily calls me three times a week.

And I’ve long observed adult children who set off on young professional adventures in places far from their parents, often return when they begin having children of their own. (Please, oh, please!)

Life unfolds as it should. Children grow and become adults. They leave behind parents who can but bestow upon them their strongest blessings.

Recently, when I teared up thinking of this spring’s daily walks with Hugo, my partner, Max, pulled me into his arms and said, “Don’t worry, he’ll be back.”

Then he suggested, “Let’s go to one of the Halloween stores and buy Rutabaga a squirrel costume. The kids won’t be able to find her when they move and we can keep her.”

This was published in the Akron Beacon Journal on Sunday, October 18, 2020.

Biobank dedicated to Down syndrome research a bright spot in 2020

Uncategorized, ,

Days after our daughter Lyra was born, my partner and I received her karyotype, or snapshot of her chromosomes. It showed she has a third 21st chromosome, which causes Down syndrome. We then spent the next few years rigorously studying the reality of a DS diagnosis — which can be fascinating and sometimes heartbreaking.

Along the way, we’ve met many parents who’ve changed the trajectory of their careers after having a child with DS, including Lito Ramirez. Ramirez was working for a biopharmaceutical strategic agency when his youngest child, Cal, was born with DS.

As he describes in a TED Talk, 18 months later, Ramirez created DownSyndrome Achieves (DSA) with the mission to establish and maintain the first Down syndrome biobank in America open to all researchers studying the comorbidities, or other common diagnoses, in people with DS.

What, you may ask, is a biobank and why is one needed?

Using rigorous procedures to ensure material integrity, biobanks collect, process and store human biological matter, such as blood, plasma, serum, tissue and more. They then give these specimens to medical researchers whose proposals meet the standards and requirements of that biobank.

Collecting human biomaterial is nothing new. There are records of ancient Greek physicians comparing diseased tissue from multiple bodies in order to develop both an understanding of how a disease worked as well as possible treatments.

But it was the explosion of the HIV/AIDS epidemic in the 1980s that propelled the development of modern biobanks. Opened in 1982, the AIDS Specimen Bank (ASB) at the University of California in San Francisco (UCSF) was one of the first of its kind focusing on biomaterials for one disease. Its existence greatly expedited the development of treatments for HIV/AIDS.

Why? Because biobanks provide a critical step that saves researchers valuable time. Simply put, without having to first find and collect biomaterials, they can get to work faster.

Today, some biobanks are disease-oriented like the USFC ASB, including those for various forms of cancer, Alzheimer’s disease, cystic fibrosis and even COVID-19.

There are other biobanks, however, that are population-oriented. Various countries, including Iceland, the United Kingdom and Sweden, have established biobanks to study the environmental and genetic causes of various illnesses. As Down syndrome is not a disease, it also falls into this category.

After years of preparation, this past January DSA Biobank opened for business and began accepting applications from researchers.

Many may think, well that’s great for people with DS, but it won’t impact my life. And there they’d be mistaken, because the comorbidities of DS are often diseases that affect the general population.

An example is Alzheimer’s disease (AD). One of the heartbreaking things we’ve learned is that by their 40s, 80-100% of people with DS will develop amyloid plaques in their brains, which is the underlying pathology of AD. The gene associated with amyloid plaques is located on the 21st chromosome, the same one of which people with DS have a third copy.

Like many parents of children with DS, we were crushed when we first learned this. However, this sad fact creates the possibility to make tremendous advances in AD research for all populations.

How so? Well, we can’t test preventative treatments on people in the general population because we do not know who among them will develop dementia. But we know people with DS will, making them a control group. Many people with DS are now participating in AD studies and any breakthroughs will be a win-win for all populations.

On a more positive note, people with DS rarely develop solid tumorous cancers. As researchers studying this at Lurie Children’s Hospital in Chicago recently stated, their research on DS populations “carries strong potential for ultimately developing gene-targeted therapies to inhibit solid tumor growth in the general population.”

Soon after DSA Biobank opened, they received their first application for biospecimens. Dr. Dimitrios Karamichos at the University of North Texas Health Science Center is studying an eye disorder known as keratoconus, in which the cornea thins and bulges out. It can cause problems with vision and, in severe cases, require cornea transplants.

Like many comorbidities, keratoconus is far more common in people with Down syndrome. On average it affects 30-40% of people with DS, compared to just .00055 percent of the general population. As a part of their effort to expand research on Down syndrome, the National Institutes of Health just awarded Karamichos $275,000 for his work.

“I’d been looking for a biobank to work with for years,” said Karamichos, whose primary specimens will be tears as they are effected by cornea diseases. He was thrilled when he found DSA Biobank and its quality supply of research materials.

Karamichos hopes his two-year study will help explain the mechanisms of the disease, and make it possible to identify who is at risk and possibly prevent the disease pharmaceutically.

In a year with few bright spots, the 2020 opening of DSA Biobank is cause for celebration. The potential to improve the lives of people with DS — and many others — has never been as promising as it is today.

This column first appeared in the Akron Beacon Journal on Sunday, October 4, 2020.

Learning new ways of teaching during COVID-19

Uncategorized,

“What did the Zen master say to the guy at the hot dog cart?” I texted to one of my students.

“Mmm, I feel like it has something to do with wholeness. But I got nothin’,” she replied.

“Make me one with everything!”

I seldom text my students and when I do, it’s usually about assignments. But currently I text this student every day because the only people she knows in Akron are those in her graduate program, which she started a month ago.

And because she tested positive for COVID-19 last week.

I do not give 2020 agency. The year, which has been unlike any other in anyone’s lifetime, did not create the pandemic, protests, political unrest and raging wildfires. Thus, there’s no reason to believe that life will return to normal on Jan. 1, 2021.https://db9ccd6b52e9d99abd691d05bcf1a162.safeframe.googlesyndication.com/safeframe/1-0-37/html/container.html

And, frankly, I’m no longer sure what normal is or will be. But the beginning of the school year has caused me for the first time this year to feel a keen nostalgia for the way things were before the month of March.

My 10-year-old son, Leif, has synchronous school days on the computer with his teacher and classmates. We are a low-screen household and normally I don’t let my kids on computers until they are in middle school.https://db9ccd6b52e9d99abd691d05bcf1a162.safeframe.googlesyndication.com/safeframe/1-0-37/html/container.html

Now Leif spends six hours a day looking at a computer. Live Zoom classes are far better than the recorded lessons he had last spring. Still, at the end of the school day, he tells us his eyes hurt.

Our 8-year-old daughter, Lyra, is doing better attending her online classes, but only because we are paying a certified interventionist to come to our house and help her.

And then there are my students at the University of Akron. I miss them. Oh, sure, I’m teaching this semester, but it’s not the same online.

I am a true extrovert. Being with people energizes me. Teaching classes of 20 freshmen not just about writing, but about music, history and culture is demanding (if done well), but also extremely rewarding.

It’s easy to shock freshmen. It’s also delightfully easy to make them laugh.

Research shows that students who sit in the T-zone of a classroom—the first seats of each row and the middle row—learn more. When I’m in the classroom, there is no T-zone because I never sit at my desk. I walk up and down the aisles, occasionally sitting on the desk tops at the sides and back of the classroom, looking every student in the eyes each day.

Now most of my students’ faces appear in poorly pixelated two-inch squares on my computer screen. I don’t know if I’d recognize them if I saw them in person.

I agreed to teach my freshman courses by dual delivery this semester. That means that up to half of my students can attend in the classroom with me, while the rest attend online.

On the first day, I hooked up my laptop to the audio-visual portal so that my online students could be projected. It didn’t work. I later learned that my 7-year-old laptop’s HDMI jack, which connects the computer to the A-V portal, is dead.

Without the ability to project my computer screen to the in-person students, only I could see the online students. Imagine trying to teach six people spread at least six feet from each other in a classroom, while also connecting to another 14 on your computer screen. It’s tough.

But no worries, because my apparently senior-citizen laptop couldn’t handle that many students in one virtual meeting anyway. It quickly froze. Fortunately, the students could still hear me.

The second week of the semester, I moved my freshman class to a computer lab, but it was no panacea. It took the entire second week to get all the technology working properly there.

Each class of students has a different dynamic so, like many professors, I build time into my semester to stay unexpectedly longer on a topic when needed. Due to those myriad technical difficulties, I blew through most of my extra time right out of the gate.

As always, there are silver linings.

Attendance is far better this semester, though one student tried to fake attendance. They appeared for roll call and then flipped their laptop screen back so all I could see was a ceiling. I received no answer when I called on said student, who now knows I’ll count that as an absence.

Also, students are overwhelmingly turning in assignments on time. When I mentioned this to my son Claude, who is in his first year of graduate school, he said, “Yeah, that’s because we don’t have anything else to do, so give students a focused assignment with a deadline and we’re all over it.”

And perhaps most importantly, the students have all been patient and understanding, which is essential in getting through these times as best we can.

This was first published in the Akron Beacon Journal on Sunday, September 20, 2020.