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.
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.
In this article, I look at online groups that special ed parents form to help each with the crazy, complicated world of special education.
When Stasi Webber decided it was time to uproot her family from their Michigan home to find a better school for her 11-year-old son with autism, she turned to the internet for answers.
The public schools in her state don’t provide the specialized behavioral and life skills training, known as ABA therapy, that her son needs; he skips school every Tuesday and Thursday to receive these essential services. But recently, Webber learned from parents on social media that her son could get both academics and ABA training in schools in New Jersey, where she grew up.
With a tentative plan of returning to her childhood home in Mahwah, she found three or four local social media sites run by special education parents and asked about ABA services at the local district, its willingness to send students to specialized schools and comparisons with nearby towns. She put her house on the market.
“I knew I had to reach out to the internet, because moms are willing to help other moms,” Webber said. “You find out the most information that way.”
On Monday, Ian sat in a reclining chair in the Oral Surgeon’s office and stared at a five foot x-ray of his teeth. Dr. Song, the jolliest oral surgeon in three counties, pointed to Ian’s wisdom teeth under the gum line, which in their infinite wisdom, were pointing sideways, instead of up and down like any self respecting tooth should do.
“Those teeth have to come out now. Like today. Like right now. Like I would do it this minute if I could,” said the jolly doctor.
So, when we got a call on Tuesday afternoon from the office saying that Dr. Song had a sudden opening in his schedule at 11:30 the next day, Steve and I went into emergency mode. We cleared work schedules. A teenage computer programming class at the community college came to abrupt end. We filled out massive amounts of insurance paperwork.
And then the worry kicked in. How was Ian going to handle sharp needles and pain? Was he going to sit in the chair and be appropriate? Or would the Flight or Fight instinct kick in? And then who knows what could happen. He processes fear and pain differently than other kids, so there was a huge random factor surrounding this operation.
That morning, I distracted myself with a trip to the supermarket for supplies – pudding, jello, a chicken to make some homemade broth. We sent Ian to his computer class for an hour. And then we drove the old Subaru to the doctor’s office.
Ian panicked for a moment when he got a look at the IV needle, but he stayed still, so the doctor got it in his arm. And then Ian’s lights went out. His eyes fluttered down.
Watching your kid go under anesthesia for a routine operation, like wisdom teeth or tonsils, is so unexpectingly upsetting. We haven’t had to do it often, thank God. Watching your kid slowly lose consciousness makes one think of death. It’s a blow to the stomach.
I said, “Oh, I’m going to cry.”
“Don’t do that! I’m a social crier. I’ll cry, too, and won’t be able to do the operation!” said Dr. Song. And the staff kicked us out of the room.
In about 30 minutes, they came to the waiting room and told us it was done. Steve and I dropped our books and ran in. Ian was dazed and stuffed with cotton.
The nurse started giving us directions for caring for him for the next few days. She must give this drill about ten times a day, so she droned through the rules.
“No straws. No toothbrushes. Put gauze on the cut for 24 hours. Don’t eat crunchy or chunky foods for a few days. Just smooth stuff like Jello and pancakes and scrambled eggs —
Ian piped in “and hot dogs and sauerkraut….”
“No you can’t do that!”
“… and sushi and sashimi… “
“Listen, I have to give the rest of the directions!”
“…and pizza and burgers…”
I couldn’t stop laughing. Steve gave me a dirty look, because the nurse was giving us some very important about medications and dosages, but I couldn’t stop listening to my boy. Then on the way home, he was asking trippy questions, like “Mom, why do you have three eyes?” “Are operations time machines? How come it’s 12:30 now?” “What’s that rubber thing in my mouth?” [It was his bottom lip.]
And we’re so very grateful that our boy not only made it through an operation smoothly and is free from sideways wisdom teeth, but that he’s making me laugh and beam with pride every day.
Midway through American Airlines Flight 101 from Heathrow to JFK, shortly after our microwaved meatball dinners were tossed out like frisbees, the flight attendant asked my son Ian if he wanted another beverage. He intently played his Tetris game on the backseat video console without replying or glancing her way.
Missing most of that exchange, I looked over in time to hear the flight attendant loudly exclaim, “Well, how RUDE is that?” She glared at me.
I recited the textbook response I give whenever Ian does something that inadvertently annoys strangers: “My son has autism, so we try to be understanding.”
I first wrote this blog post back in October 2013. Due to the mysterious magic of google searches, it is my most popular blog post. I thought I would update it this morning, five years later.
My son has high functioning autism or Level 1 autism or whatever they’re calling it these days. Because researchers now think that there are many different kinds of autism, my kid’s variety is characterized by speech and social deficits, average to superior IQ, hyperlexia, some anxiety and sensory issues, no obsessions, no stimming.
He’s only a sophomore in small public high school right now. His story isn’t over yet. He still has two more years before graduation, and we face major decisions about his future. Sill, in those five years, he has made so much progress. He’s now completely out of special ed for math, and he participates in after school activities with the typical kids. Even in the past year, he has made stunning changes. We’re now considering future plans for him that were inconceivable when I first wrote this blog post.
Because this blog post brings in so many random parents desperate for answers, I thought I would spend the next thirty minutes writing up what worked for us. Now, I’m not a hundred percent sure that our methods for dealing with my kid’s autism are responsible for these changes. Maybe simple brain maturity would have gotten us to the same point. Maybe these methods only work for my particular kid. I can’t be certain, but just the same, I’ll share.
How do you join a conversation at a middle-school lunch table? What do you say when someone says hi to you in the hallway and you don’t know her name? How do you delicately correct a member of your lab group in science without calling him stupid? Is it appropriate to tell your English teacher all about your deep and abiding interest in Pokémon characters?
A set of subtle and complicated social skills is embedded into the entire school experience, from the lunchroom to the classroom. While most children naturally learn how to take turns talking with their friends and stay on topic during classroom discussions, these skills do not come easily to kids on the autism spectrum. Social and communication deficits are one of the hallmarks of this condition.