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.

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.

Who Would You Have Been?

On Sunday, we checked out a couple of exhibits at the Metropolitan Museum of Art looking at courtly life in Europe during the Renaissance and the end of the Middle Ages. One exhibit was on the armor and stuff from the era of Maxmillian I. The other was on all the gadgets and fancy stuff that were in the courts between 1550-1750.

We played a game. Who would you have been back then?

Looking at all the gears and intricate mechanisms in the automatons, we decided that were made by someone like Ian — someone with an instinctive knowledge of machinery, attention to detail, and zero interest in social life. In other words, they were made with someone with an autistic spectrum disorder. He would have thrived in an old workshop. Or in a monastery somewhere, rewriting old manuscripts before the invention of the printing press. There’s no question that half those old monks were someone like Ian.

Depending on my birth, I would have either been in the kitchens of a castle or deeply involved in castle intrigue, poisoning my husband’s enemies. Steve would have been managing the ledgers and documents for a lord. Jonah, too wiry and thin to wear the pounds of armor, would still have been involved in the military in some way. Maybe as a scout or part of the cavalry.

Work and Life In Chi-Town

Last Tuesday at around 4:30, I was sitting at my desk studying google maps trying to figure out how to get from O’Hare airport to a hotel in the Loop in the cheapest way possible. I won a scholarship from a journalism group to attend a writers conference in Chicago, which paid for the hotel, airfare, and the conference, but ground transportation was my own responsibility. A cab ride wasn’t going to break our budget, but I like my side of the Quicken budget to be in the black, not the red, so I studied the subways lines.

I happened to look over at Steve’s desk behind me in time to see Ian sloop out of his chair and hit the floor. His eyes were open, but his body was stiff for about five seconds. When he came back to consciousness, he asked why he was on the floor and said that he had image flash through his head before he passed out. He said he thought he was at a New Year’s Eve party. He said that this image had flashed through his head a few times in the past month.

I’ve seen seizures before. When I was a special ed teacher in the Bronx many years ago, I had a student, Shawnee, who would have grand Mal seizures every day in the class. She would shake and tremble for about ten minutes. Ian’s episode wasn’t anything like that, but it still did scream “seizure” to me, so I texted his reading tutor not to come and immediately called his pediatrician and neurologist.

Afterwards he was fine. Went back to his video games and his homework like nothing happened. I was a wreck. I scheduled doctor’s appointments for the following day. I told Steve. I arranged with my sister to help out with one the appointments, because I had my own appointment to get my usual pre-conference haircut and blowout. The cab was going to pick me up to take me to Newark airport on Thursday at 5:30am. If my hair was good, I could just wake up and go. Dinner plans were scrapped, so Steve got a pizza on the way home from the train station.

At the second appointment at the neurologist at 5:00, she said that she didn’t think that Ian should be left alone until we figured out what was going on. So, I arranged coverage of Ian between the end of school, before Steve got home. Again, my sister was enlisted to help. Steve left work early, but couldn’t skip out of work entirely.

The conference itself was good. The topic was the transition from high school to college. Various experts, who hoped to be sources for news articles, gave presentations for two days. We crammed into a stuffy little room at Northwestern and asked questions that were general enough to not show our hands to other journalists in the room.

As I walked through a deserted Newark airport at midnight on Friday, I relaxed for a minute. The adrenaline that had kept me going through those few days was ebbing. My overnight bag dug into my shoulder, because I always overpack when I’m nervous. Next time, I’ll pack less, I promised myself.

But will there be a next time? I’m already long in the tooth for this career. My most recent plan was to do something completely different for a couple of months, and write some long form essays and book proposals that have been percolating for months. I even filled out a job application before Ian’s slump. My sister texted me to say there was a message on the answering machine from a manager of a bookstore.

Plans to work outside the home were shelved, because I need to be available for more doctor’s appointments. I can’t take advantage of family to mind the kid, while I work a minimum wage job for kicks. Hopefully, we can figure out what happened quickly, and then I’ll try again after the holidays.

Over the weekend, I just processed information and recovered from the days of stress. I cancelled plans with friends and nested with family. Jonah came home for the day. I cooked. I boiled down some chicken bones from the freezer and other scraps to make a witch’s brew of soup broth.

I did a couple of chores in the morning yesterday, and then left to pick up Ian at 2:00 for an EEG test. The technician measured Ian’s head and marked up his forehead with a red marker. We assured Ian that those marks were for the suction cups sensors, and there were no plans for brain removal. We sat in a dark room for an hour, as the technician looked for misfires in his brain. We’ll get results today. If the test is inconclusive, he’ll have to wear an electrode cap for two days for better results.

Hopefully, the tests will show that he was just tired or dehydrated. Maybe it was a weird kind of migraine headache. But 30 percent of people with an autistic spectrum disorder also get epilepsy, so we do have to seriously prepare ourselves for a worse case scenario. The worse case scenario isn’t terrible — medication is great these days — but it will be just one more burden on the kid, who already has his share of burdens.

With fingers crossed for a good phone call from the neurologist at 9, I’m making adjustments in work plans. I’ve been writing an essay in my head for the past day, using the scraps and bones of information from the conference, previous articles, and recent experiences. Like my chicken broth, it’s going to take some time for all this to cook and for the flavors to marry. Hopefully, in the next few weeks, Ian will have a clean bill of health and I’ll have an essay or two sealed up in tidy little jars that can be sent to editors.

Models of Education That Are Really, Truly Happening At A School Near You. Like This Isn’t a Crazy Theory. It’s Happening. Get Used To It.

Back when I was in elementary school in the mid 1970s, I read a lot. I would have a stack of books on my side table and read several simultaneously. If I really loved a book — The Boxcar Children, The Wolves of Willougby Chase, Anything by Laura Ingalls or Louisa May Alcott, Betsy, Tacy, and Tib, All of a Kind Family – I would read the book seven or eight times.

Because I loved reading and did it a lot, I got pretty good at it. I was several grades ahead of my peers by third grade. So, that meant that I was bored in regular class. I had already learned that kids hate you if you know all the answers, so I would pretend to not know answers to the teachers’ questions. Pretending to be dumb became such a habit that I was in college before I stopped doing that. Weirdly enough, I had to learn to act dumb again when I moved to the suburbs, but that’s another topic.

What kept me sane in English class was the beloved SRA kit. A quick google search for the “SRA Kit” brings up tons of nostalgic blog posts. In a nutshell, the box contained color coded, short reading passages and questions. If you answered the questions correctly, you moved up to the next level. Every kid worked at his or her own level. So, I could go as fast as I wanted and didn’t have to be publicly shamed for being smart.

Today, this is called individualized learning. With the rise of technology, the proliferation of low-cost chrome books, the popularity of Khan Academy, schools are increasingly looking at how they can leverage technology to supplement regular instruction. In a traditional classroom model, all 30 kids have to learn the same material at the same time. Teachers can’t reach the very smart or the learning disabled. With limited time and resources, they have to teach for the largest group of kids — the typical ones.

The advantages of moving towards the individualized learning model is that everyone is served and can learn at their own particular speed. The disadvantage is that it is heavily reliant on technology, and some kids are bored by machines. There really needs to be a teacher in the room providing feedback, support, and all that.

The more advanced form of individualized learning has a few different names — mastery-based or competence-based learning are most commonly used. This model goes back to the SRA kit. You can’t progress from yellow cards to the orange cards, until you have provided evidence that you really know the yellow cards. So, as Sal Khan explained to me, students can’t move onto do algebraic equations until they know fractions. Right now, in most schools, they do. Schools need kids to move from subject to subject, from grade to grade, as a cohort. But in his new private school and others like his, that doesn’t happen anymore. It’s not about seat time, they said. It’s about showing mastery of a topic.

That system of showing proficiencies in a range of topics is not theoretical. It’s the system in many schools in New England and in many of the top private schools in the country. Our very vanilla school district in New Jersey is considering implementing a system like this here. It’s coming.

Now, many of you might wonder how a kid like Ian, a non-traditional learner, would fare in a school that didn’t ring the bell to change classes every 50 minutes.

Ian already has a version of this individualized learning model within a traditional school and after traditional school. He is in a special ed reading class, but he doesn’t get much out of it, because his learning differences are totally different from the other kids in the classroom. So, in study hall, the school district bought him a reading program — IXL. He plugs through the different assignments. And then I supplement all that with a real teacher after school. He’s made a lot of progress in the past year. I think he’s up two reading levels.

And then some school geniuses put him in the lowest level math class in fifth grade, where he learned absolutely nothing. He was stuck in that level for all of middle school, because his teachers weren’t the sharpest knives in the drawer. So, I took matters into my own hands and signed him up for Kumon, where he learned at his own pace, completing worksheets. And guess what? He’s out of special ed and getting an A in his class.

Because of his differences, he is in the resource room class for science and social studies, where he watches a whole lot of videos on the computer about particular topics. It works for him. He has a better grasp of American history than many of my students did when I taught at CUNY.

I don’t even have time to talk about how community colleges are increasingly taking over the job of high school education. The college model of one lecture and lots self-directed reading/research is basically this individualized education model.

So, it’s happening, people. It’s happening, because it does work for some kids. It’s happening, because we’re slowly working towards a system with fewer teachers or a system with lower expectations for teachers. It’s happening, because people don’t want to pay for traditional schools.

So, with changing notions of education comes a changing needs in school structures.

Never Give Up

When Ian was really little, like five years old, I had a meeting with a high level special education administrator. I was pretty miserable at that time. I didn’t feel like he was getting enough support for his disability or being appropriately challenged. We knew that he was smart. His test scores were in the 99th percentile. But he had SO MANY issues at that time.

He could barely understand what people were saying to him. His ability to comprehend language went down to zero when he was upset. His pre-school teacher would pass him written notes during those times, because he could read, but he didn’t understand what she was saying.

He frequently screamed or got upset, but couldn’t tell people what was bothering him. Looking back on it, he was just scared all the time. You would be too, if you didn’t understand what people were talking about. He had lots of sensory issues; he couldn’t tolerate loud sounds, bright lights, clothes.

Now, when he hears songs from that time or an old movie pops up on the TV as we’re flipping through channels, he runs out of the room. He said that those images and music trigger “nightmares.” He said that he gets flashbacks. I think he suffers from PTSD from autism.

Anyway, I was in this office with the administrator to request that he be held back for a year, so he would have another year to grow and catch up with his peers. She said no, because it would cut short his time in high school when they would have to train him for a job. In other words, she looked at him and saw someone who would need lots of training to stack shelves in Walmart. She had sized him up at age five and wrote him off.

Twelve years later, Ian took his PSATs this month. He spent an entire day at a band festival yesterday, playing bass drum and marching around the field. He blended in. He still has language deficits, sensory issues, and nervous tics, but he’s also rocking his talents in music and computers. He has a future ahead of him. A good one.

Every year, he gets better. This year’s band festival went much better than last year. He’s less likely to get irritated with peers who do random things. He doesn’t need an aide to supervise him. He chatted with classmates. I get lovely notes from his teachers, who tell me that he’s continues to surprise them.

Here’s what I’ve learned from raising a kid with autism — brains heal. They don’t heal completely, of course; Ian will always have his struggles. But with lots of work and opportunities, brains do get better. So, sizing up a five-year old and predicting adulthood is not only useless, it is harmful.

That administrator urged me to stop being so miserable and accept my kid’s limitations. She suggested that I spend more time on my career. Just the week before, another administrator had told me to stop worrying and to get a manicure.

I am so glad that we didn’t listen to them.