Transitions: Excerpt from Newsletter 2/22/20

Here’s an excerpt of the latest newsletter (link fixed). Subscribe please!

Feb 21, 2020

Hi all!

I am a week late on the bimonthly Friday newsletter and am feeling terribly guilty. But I have an excellent excuse, I swear! 

Last Friday, I spent three hours at an IEP meeting for my kid, Ian. The rest of the day was spent packing and driving away to a much needed break in Vermont for the long weekend. More on the snowy paradise in a minute. Let me tell you a bit about IEP meetings first. 

An IEP is like a contract between the school and the parents, which describes the disabilities, provide goals for the kids and teachers, and measures student progress. It came out of mid-1970 reforms of schools that mandated that special ed kids were entitled to a free, appropriate education. Every year, parents and teachers sit down for a meeting to update the IEP. 

IEP meetings are both a blessing and a curse. They’re a blessing, because before they existed, special ed kids had no right to an education in this country. Kids with autism, Down’s syndrome, all kinds of mild and severe learning disabilities were routinely denied an education and spent their days isolated in their homes or institutions. It wasn’t until 1975 that schools were forced to educate all kids. That date should be celebrated and put on national calendars.

IEP meetings are a curse, too, because they’re a fucking pain in the ass. 

Now our meeting went so long, because these IEPs always need work. There’s a Platonic Ideal of an IEP and then there’s what we usually get. With 15 years of IEP meetings under my belt, sometimes I’m the most experienced person in the room. We also had to spend a lot of time talking about Ian’s new health issues and how they were impacting on his stress levels, which then impact on his behavior in class. 

When the kid is over 14, IEPs must also include something called a Transition Plan, which states the long term and short term goals for the child, focusing on plans for future employment and on-going education that happens in 18-21 programs (kids with IEPs are entitled to be educated by public schools until 21). With Ian in his Junior year of high school, we had a lot to hash out. 

He’s an extremely smart kid with very bad social skills, so what are we going to do with him? College or an 18-21 program? He’s super good at computers; does he need a four year degree to get a job in that field or will a 2 year degree suffice? Friday’s discussion about transition from high school continued onto with another hour-long phone call with the high school’s Transition Coordinator.  

So, a team of four professionals and I have had four hours of discussion just in the past week about Ian’s long term career plans and how to align his education — both K-12 and higher ed — with those goals. Now, most special ed kids don’t get this kind of attention, but we do, because I’m one of THOSE parents, and my kid is educated in a school that is as close as any school gets to the Platonic Ideal of Schools, thanks to a hefty 30-year mortgage. 

You know how much time that my older typical kid got from his high school guidance counselor on these kinds of matters? Do you know how many times his guidance counselor asked him what he wanted to do after graduation? Do you know how much work his guidance counselor put into looking for after school activities or internships that would line up those career goals. Answers: None. Zero. None. 

Every kid deserves this help with transition from school to the workforce – not just kids who are blessed with parents who have a tendency to speak at school board meetings. But it isn’t happening. I’ve written before about the problems with the lack of career and college advice from guidance counselors, particularly about issues related to work and local community colleges. 

Kids need this help, because workplaces and opportunities are entirely different from career paths from when we were kids. Parents can’t help. Most parents don’t know anything about the opportunities in cyber security, for example, but that’s a super hot field right now. You know what’s not hot? Journalism and doctoral programs. [Weak laugh.]

The good news is that smart people are recognizing these problems and starting do more about it. More on this later. 

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.

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.

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.

In the “Crazy, Complicated” World of Special Education, Parents Turn to One Another for Help — On the Internet

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.”

More here.