Happy Leftover Day

Hope y’all are sitting on the sofa with a good novel today. I am. With the smell of turkey bones being slowly turned into soup broth. The boys are quietly doing their own things. Steve’s at work, but hopes to cut out early.

I really could be doing some work, but I’m wiped out. Between a morning 5K race, which I was not really in shape for, and then dinner for 14, I’m not capable of much today. My legs ache.

I remain confused by Black Friday, since those sales are available all the time, but whatever.

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.

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.

Chill Out

On this lovely Saturday afternoon, I sent Steve off by his lonesome to watch Ian bang on his bass drum at the football game. I need to put in a couple of hours on a big article that I’ve been working on since the end of August. I’m about ten hours of work away from submitting the piece to the editor. Maybe twenty hours. Who the hell knows?

And then I’m going to chill out for a couple of weeks. I’m going to exercise every morning and sell some books on the Internet for the fun. (Somebody just bought $75 for an old set of encyclopedias that were heading for the dumpster. Who knew?)

I need the time to regroup and reassess plans. I’ve been freelancing education articles, on and off, for seven years now. A seven-year anniversary seems like a good time to look at my ROI. I’ve paid a lot of dues (writing for free). Is all that effort paying off?

I basically like what I do and would be content to keep doing it forever, but at some point, one should question that plan when one could make more money working part time shelving books at Barnes and Noble.

This current article was paying well enough, until I kept digging and realized that I had a bigger article than I anticipated. I’ve put in so many hours into it, that at this point, I’m working for free. I suppose it’s my own fault. I’ve gone way beyond the original plan for the article. But I just couldn’t stop myself.

Between stressing myself out over this article and doing too much at home, my insomnia flared up again. It’s really hard to function on three hours of sleep.

So, chilling out is happening. We’re not over scheduling our weekends with socializing. I’m not signing on to write anything except for essays or editorials for a little while. I’m reading long blog posts from Martha Stewart; I find her very soothing.

And inspired by Martha, we’re getting caught up with home chores. We have some driveway work happening this weekend. Steve’s laying down a PVC pipe underneath the driveway with tubes that will operate a future sprinkler system. We have a mason repairing the front stairs. And then the driveway guys will come back next week and pore out the asphalt.

Enjoy the weekend, folks!

Parenting Right: It’s Hard to Find Time to Make Dinners, Take Hikes, and Be With Grandparents, But It’s Worth It

For a long time, I’ve complained about the toxic environment that our kids inhabit today. On Sunday, Kim Brooks in the Times wrote that schools need to change — longer lunches, recesses, less emphasis on tests — to make kids’ lives better.

But we need more than some simple fixes in the school day. WE need to change. Schools are democratic institutions; they reflect the will of the community. And the community wants their kids in the best college possible. So, that means squeezing in more desk time and padding the resume with lunch-time bogus clubs. In order for schools to change, we need to change. And even if schools change, that’s not enough.

I hesitate to talk about how Steve and I have parented our kids, because I don’t want to parent-shame anyone. And we’re not perfect. I love my cellphone way too much. So, let me talk about what we’ve tried to do, not always perfectly.

We have family dinners about five or six times per week. I cook a meal, we sit at a common table at the same time, we eat it, and we talk a bit.

It sounds really simple, but not many families can do that anymore. I haven’t considered job openings in NYC, because there’s no way that my family would have food on the table if both Steve and I walked in the door at 7:00.

Even cooking at a beach house.

Aside from the benefits for mental health, with 2 teenage boys, we would very quickly be broke if I didn’t cook dinner regularly. They seriously eat VAST quantities of food. Last night, I made a chicken stew with about 4 pounds of chicken, 12 carrots, 3 onions, 3 celery stalks, wine and chicken broth, herbs from the garden, 5 potatoes, loaf of bread. It cost about $20. If we step into a restaurant, even McDonald’s, it’s a $60 minimum. I hope to squeeze it into a second meal by putting the leftovers on rice tonight.

Dinner time is a good time to debrief everyone at the same time about their days. It’s a time when we can catch problems or put a bandaid on a mental boo-boo. It’s a transition time for Steve, who is still sometimes in work-mode when he walks in the door. But even with pressure cookers, it’s very hard for families to do what I do every day. That chicken stew meal took about 2-1/2 hours to prep and cook; very few people have that time today.

We do a family activity together every weekend. Sometimes we go on bike trips or hikes. Sometimes we visit extended family. We go to museums a lot. None of it costs a lot of money, but it’s hard to have the time to do those things if the kids are in lots of high pressure sporting activities and are working on school projects. Or if the parents are catching up on household chores on the weekend.

Weekend hikes are fun!

We live near extended family. Again, this was a sacrifice. I didn’t put myself on the national market for an academic job, because I wanted to live near family. It’s good for the kids. And it’s good for me. My mom is driving Ian to band camp today, so I can get in a full day in front of the computer.

Always celebrating something.

I think we all know that these things (and more) are important for kids, but it’s hard to proscribe cures that are unworkable for most families. People need (and want) to work long hours. It’s also very hard to run in a different direction from other people in your community; if their kids are in all weekend sports programs, then your kid is going to want that, too.

In some ways, we’ve benefited from having a special needs kid and have always been on the outside of suburban life. Still, I think even with the limited time, families could step off the fast lane a little more. It’s actually super fun.

The Wisdom of Teeth

Ian at the Tate. Photo Credit: Jonah

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.