I am re-reading I Know Why the Caged Bird Sings. Maya Angelou’s writing leaves me utterly awestruck. This is one of the few books I can read again and again, learning from it every time.
Usually one of her casual phrasings will stop me in my tracks – which happened early in Chapter 2 this time. She wrote:
“Like most children, I thought if I could face the worst danger voluntarily, and triumph, I would forever have power over it.”
“Like most children…” she said.
Apparently I am not like most children.
I rarely consider attempting to “triumph” over danger – let alone the worst danger. In fact, if danger lurks, I hide. If something truly scares me, I freeze. If I have to face adversity, I do it involuntarily.
If I am scared of something, I never, ever tackle it head-on. And I surely didn’t do this as a child.
But I will never forget what Dylan did. He did just what Maya Angelou said that “most children” do. But personally, I think he and Maya Angelou are just superstars.
He went to the zoo with his grandparents, and a gorilla stood up inside its glass enclosure. Dylan was three, and the gorilla was a huge and hulking monster on the other side of that glass.
And the gorilla was having a bad day. It stood up and kicked the glass – right at Dylan’s level. The terror that must have filled Dylan is unthinkable.
And Dylan was terrified. He came home chattering and repeating, like a mantra: “The goll-ill-a KICKED da gwass!”
Several days later, we went to the library. Dylan specifically requested books on gorillas. He got every one he could find. He read fiction and non-fiction alike. He devoured information on gorillas. He asked to see pictures on the computer. Then – three months later – he asked to BE a gorilla for Halloween. So we got him a gorilla costume.
Dylan was a toddler, and he was tackling his fear head-on. He learned everything he could learn, and eventually determined that he understood gorillas enough to no longer be afraid.
He believes he will “forever have power over it.”
Today – this month – Dylan is working at Field of Screams. He walked the trail once, maybe twice, having people scare him.
Then he tackled that fear, too. For two years, he has worked behind the scenes at a place that so terrifies me, I didn’t even walk the trail when I knew he was working there. When I picked him up at the end of the night, he came to the car in make-up that made it tough for me to talk to him. Blood-spattered or green-and-gooey, his face was too creepy even for his mom.
I’ve seen every concert, every sports performance, and every play Dylan has ever done. But the Trail of Terror was too much for me.
So finally, this year I went to see him at work.
I faced the danger voluntarily. I dreaded it all day long. I begged the workers to start our ride before dark, because I didn’t want (Shane) to be too scared.
But we went. I went. I walked through all the scary trails and houses. And it was definitely scary. But we had an absolutely wonderful time. Dylan scared the crap out of me, as did some others. But it was actually quite fun.
I don’t know that I have any new power over what frightens me.
But thanks to Maya Angelou and Dylan, I learned that I can try.
I got a message from a stranger on Yelp, where I had reviewed the only office in our area that offers Vision Therapy. The message said:
“Just read about your experience with the VT. Could you share how much cost the therapy session? Trying to see if budget allows before the appointment.
Thanks
Luci”
Shane was born with a vision processing disorder. He knew all the letter sounds at age two, but he still couldn’t read when he was almost six. He would listen to audiobooks, and wouldn’t pay attention to the words on the page when I read to him. When he was old enough to try to read, he would rub his eyes and say he was “too tired” to read.
Vision Processing Disorder is very real, and very tangible, and mimics dyslexia in many cases. Shane rarely looked me in the eye as a baby. He simply couldn’t. His hearing was over-developed, so he was ultra-sensitive to noises. When watching a movie, he would cover his ears when he was scared, rather than his eyes. He used his ears for everything because his eyes didn’t track what he needed them to track.
Vision Therapy is a relatively new treatment, and insurance won’t cover it. For the most part, people don’t “believe in it” yet.
But Vision Therapy changed Shane’s life.
So I wrote this response, and said a little prayer for Luci.
“As the old adage goes, if you have to ask how much it costs, you can’t afford it. Insurance covers very little (if any) and the initial exam is a few hundred dollars. Over two years, we spent slightly less than $20,000. Insurance SHOULD cover this – because it is a physical problem – but it does not. So it was very, very expensive.
That said, our child could not read. He could not process letters or numbers, so school was nearly impossible for him. He would have been in the learning disabled program (if he’d been lucky) because he couldn’t function the way most kids do. He knew letter sounds but he simply couldn’t focus on the letters.
After the $20,000 therapy, he is one of the top readers in his class. He writes books in his spare time. He is in the gifted program for math. He is athletic now – he wasn’t before. He can make baskets in basketball, hit a tennis ball, catch a baseball. He’s a drummer in the school band and could not have read music before Vision Therapy. His whole life has been different (he is now 12) because we were able to spend that money.
His eyes and brain did not work together. He was sad and frustrated and his whole life was difficult. He would have needed special education in school, and he seemed to have issues with hearing ‘too much.’ Now his brain and eyes DO work together. He has no issues with hearing, reading, playing, or seeing. We would absolutely, without a doubt, find a way and pay that money again. It is the best thing we’ve ever done for our son. I know it’s a ridiculous amount of money – but it is worth it to change the life of a child, or even an adult. I wish you the very best.”
Please say a prayer for Luci, too. So few people can afford $20,000. We sure couldn’t.
The fact that insurance doesn’t cover this service is abominable.
But we made it happen, and it changed the life of a child: mine.
Given Dylan’s great success with his GPA and turning in work for the past week, some people are wondering about Dylan’s driving opportunities.
Mostly, Dylan is wondering.
Dylan has done well with pulling himself out of the gutter. But this is nothing we haven’t seen before. And there hasn’t been much time yet for him to fall into another gutter. His behavior hasn’t changed much – except that he brought me a note from his teacher before I even asked him to get one. He is still not studying. He is still spending hours and hours and hours on his cell phone. He hasn’t done any SAT practice at all, in spite of my insistence that he needs to do it at least five times a week – particularly this month, to get ready for his PSAT test in a few weeks.
When given the option of school work or no work, Dylan still chooses no work. Instead of taking the bull by the horns and tackling his responsibilities before they become problems, he is tackling the problems one at a time, as they come up. So while his behavior is good, I wouldn’t call it “responsible.”
In fact, he hasn’t even done what is needed to get his learner’s permit. I told him he needs to find out when and where to take the test. (This information is available online and can be acquired in two minutes.) Then he needs to sign up for a time to take the test, and study to get ready for it. Then he can, at least, get his learner’s permit.
Dylan hasn’t even queried about when and where to take the test. I guess he doesn’t care all that much about driving after all.
It’s a shame, really, because he has great skill in driving. He was only four when he was able to steer his grandparents’ electric toy car down the sidewalk, following a perfect path – except when he decided that he was a monster truck driver, and rammed the car into a tree. Dylan has also been driving go karts for years, and really knows what he’s doing on the track, and in our yard.
But he needs to do quite a bit more before he’s able to drive on the streets. Otherwise, it’s like giving a kid fencing lessons and then expecting him to be a great chef. Dylan’s skills need to be a bit more refined.
And that’s what practice driving is all about.
For now, though, there will be no practice driving. There isn’t even a test to take. Thank God, he has plenty of time to learn.
I went into Shane’s room to get his library books – which were somewhere beneath a pile of rubble. I couldn’t get his CD books because there were CDs scattered everywhere. There was money all over the floor – in piles, but all over the place. His bed wasn’t made – although the covers were haphazardly pulled up – and there were toys, books and stuffed animals absolutely everywhere. The room looked like Hurricane Matthew had been inside the house.
Shane has had virtually no reaction to my pleas for him to keep his room clean. But he likes lists, particularly numbered ones. So I wrote the following:
THIS IS NOT OKAY.
The bed is not made, not even a little. The stuffed animals are everywhere. There is money all over the floor. The CDs are not put away – none of them! – and there are books everywhere. There are magic tricks and toys and hats and coins and STUFF EVERYWHERE.
THIS IS NOT OKAY.
Perhaps you will understand better with a TOP 10 list:
10. We can FIND things after we put them away.
9. Our stuff stays nice for years, instead of minutes.
8. Stuff we borrow (from friends or from the library) can be returned in good condition.
7. When someone comes over, or sees the room, we are not embarrassed by it.
6. When someone tries to walk in the room, they can.
5. A neat room makes your life a little happier when you see it.
4. Your parents will stop nagging you to clean.
3. You can show off the stuff you want to display – like your photography.
2. Your room won’t smell bad.
1. We want pests – like roaches and mice – to live outside, not in our house.
FIX THIS TODAY. NOW.
The next step will be to take away video games if you don’t keep your room clean.
Please don’t make me take that next step.
Then I closed his door, taped up the sign, and walked away.
Later, somehow, Shane cleaned the whole mess in less than 15 minutes.
It took me longer than that to write the letter.
Dylan’s case manager sent me a note this week.
Given that I have been so focused on how terrified I am, that Dylan will fail his first quarter of tenth grade without my heroic assistance, I decided to post the case manager’s note here.
Please note that, on this day, Dylan has an A in Foundations of Technology, five B’s, a C in his AP class (“It’s hard, Mom!”) and a D in Algebra 2 – only because he hasn’t finished a quiz that he’s tried to finish several times. He is actually heading for Honor Roll again!
And here is what his case manager said:
I just met with Dylan. Dylan and I chart his grades whenever we meet. I don’t know if you see this, but today compared to his last meeting with me the computer science and chorus grades stayed the same and all other grades improved. Additionally, many grades are high percentages for moving up to the next letter grade. Dylan knew this before we even began to look at his grades. He could tell me what was missing/waiting for teacher to enter grade/to complete before I even looked at the class. He is very focused and aware of his progress and what he needs to do to improve. Compared to last year, work completion and turn in has greatly improved. For example, in Algebra all assignments are turned in and he will be meeting with (his Algebra teacher) to take the quiz. Not to say that he doesn’t still need support, but progress comes at steps at a time not miles. I am very proud of him.
I am proud of him, too. I have read this note six gazillion times.
You GO, Dylan!
Dylan’s GPA was 1.7 last Friday morning – the day he was supposed to start work at Field of Screams. He’s not allowed to work unless he has a 2.0 or above – and all of his missing work needs to be turned in.
Conveniently, when his work is turned in, his GPA always goes up. He doesn’t turn in crappy work. In fact, he often gets A’s on his work.
Those A’s are then docked up to 50% for being turned in late.
So on Friday morning, even after Dylan’s “I-got-this” attitude, I was not hopeful.
I texted him, panicked:
You still have a D in Foundations of Technology. You have a D in Algebra. You have a C in Computer Science. You have a C in English. You have a C in Government. You have three missing assignments in Government now. And you got a D on your last Spanish quiz so you barely have a B in there. And you got a NINE OUT OF 40 on your Chorus quiz! I don’t believe you have been studying for anything.
He texted me back:
I will take care of everything. There’s honestly no chance that I got a 9/40 there must be a mistake
For the next four hours (since it was a half-day), I got updates from Dylan. He went from teacher to teacher, fixing things. He had an assignment in English that had been missing for weeks. He finally printed it out and turned it in on Friday. His Government teacher wrote a note that explained – oddly – HER mistake in putting zeros in the computer when the assignments weren’t even due yet.
And then his Chorus teacher sent a note explaining that Dylan’s grade was a 9 out of TEN, not 9 out of FORTY – oops, teacher error.
As I noted in a previous post, teachers have a very hard job.
Dylan stayed after school to finish a few things and came home with a whole pile of handwritten notes from teachers, explaining what had been turned in, what errors happened on their end, what Dylan completed. I got notes of all different shapes and sizes, and told Dylan he would be allowed to work – and to take part in extracurriculars again.
Then, when the computer system updated with his grades fixed… Dylan had a 2.7 GPA.
I’ll take it.
In one week, and with some assignments so late that they were still not graded, Dylan pulled up his GPA to 2.1. He has now turned in everything (and I have confirmation from his case manager and teachers about it) but since some of it is not graded, I am still anxious.
VERY anxious.
Because in three days, he was missing five more assignments. He didn’t finish an algebra test and his English quiz still hadn’t been graded. His grade went from that luxurious 2.1 down to a 1.7 again.
Meanwhile, he signed up to work 17 days at Field of Screams. We scheduled another voice lesson for him. And he became president of the Ultimate Frisbee club, which starts practice next week.
“Don’t worry, Mom,” Dylan said. “I’ve got this. You don’t have to worry about it anymore.”
I tried to relax. “Okay,” I said, my voice cracking slightly. “You’ve got this. I will shut up.”
Less than 24 hours later, I was texting him a list of his missing assignments. I’d emailed his case manager and started to write to his teachers – but decided to write this blog instead.
I will wait. Dylan does not have to turn in his papers. He will survive. He can fail tenth grade and his will still survive.
He just won’t work at Field of Screams. He won’t be allowed to play Ultimate Frisbee, let alone be president. And he won’t take any more voice lessons.
This is not the end of the world. It will be hard for him to accept, and it will be miserable living with him complaining all the time about how he’s got everything under control, even though he has nothing under control.
But yesterday, he sat on the couch for an hour – as per our contract – and worked on his AP Computer Science assignment. He got a 100% today, when he turned it in ON TIME.
So I haven’t given up hope. I will not ever give up hope.
I just have to accept whatever happens – whatever happens – and stick to the contracted consequences.
Even if it’s horrifically painful and sometimes makes it hard to breathe.
So I have started my substitute teaching career.
Having worked as a one-on-one “home and hospital” teacher for the past few years, I was nervous about going into a school – and not being recognized as a parent. When I walk into a school as a substitute, I am just that: a substitute.
Parents always get great treatment.
But I’ve substituted a few times now, in different grades and positions, and I have been having a ton of fun. In fact, I’ve been clamoring for jobs on the computerized system almost every night. I am excited to be back in a work environment, and around the children. I am excited to have something to do besides plan my next college tour.
And already, I have learned a few things that I forgot when I was teaching (during the dark ages):
- Teachers have a very, very, very hard job. Keeping kids entertained for a single hour – especially a large group of kids – and educating them is nearly impossible. And teachers have to do just that for seven hours, five days a week! Substituting means that someone else has to think up “the plan” – how to entertain and educate the kids. This is, by far, the hardest part of the job – and I don’t have to do it. (This doesn’t even scratch the surface of the obscene amount of work they have to do after planning: grading, discipline, dealing with parents, staff, administrators and other teachers, and answering emails from helicopter parents like … well, like some parents.)
- Kindergarteners are cute, but teaching them is like herding goats. After only two weeks of substituting, I broadened my horizons from “only elementary school” to “elementary and middle school.” I like kids who are old enough to help me do what I need to do, like find the cafeteria and use the classroom technology.
- No matter what age I teach, I compare all the kids to my own. I can’t help but recommend occasional “exercise time” for the kids, given that Dylan needs exercise the way he needs air. And I can’t help but notice how many underappreciated kids there are, who make no waves and cause no distress, and get completely ignored. I give them special attention too, because of Shane.
I think substituting is going to be good for my parenting – and good for me, period. I need to work. Teaching one kid is very rewarding, and I intend to continue doing that. But being in the school, being reminded of what my kids have gone through … there’s something precious about that, too.
THIS is why I don’t watch (or listen to) the news.
I heard a report on our local news station that said (paraphrased by my memory), “Brain cancer is now the deadliest cancer among children.”
This is news because, as we all know, brain cancer is a horrific and deadly disease. So this is news.
Okay, I thought. Brain cancer must be on the rise.
But no.
There was a very small snippet – an almost ignored snippet – of a quote from an expert, someone who worked on the report for this finding.
She said, “This news is largely due to the higher success rates in treatment of leukemia patients.”
In other words, I thought, this is good news. Leukemia deaths are down, which has made brain cancer rise to the top of the heap of deadly cancers.
But the local radio station ignored this quote. They went right on, very quickly, almost talking over the “expert,” to spout some statistics about how deadly brain cancer is, and how many child deaths per year are attributed to cancer.
It was like they didn’t hear her at all.
Leukemia deaths are down! I wanted to scream. Why can’t they announce THAT? Why can’t THAT be the top story?
Because the only news that brings in ratings is news that promotes fear.
That’s why I despise the media.
It’s why, back in the day, I stopped chasing a career in journalism. I wanted to write – not to report everything bad that was happening in the world.
Why can’t we report that a dog had puppies, and encourage people to come out and see them?
Why can’t we make a big fuss about the Teacher of the Year awards instead of focusing on the teacher who sent inappropriate texts to a teenager?
Why can’t we talk about the hardworking people in their offices all over the country, who have little successes every day that keep them coming back to their jobs, instead of waiting for someone to get caught embezzling millions of dollars so we can report the crime?
Why do we report only shootings and diseases and acts of violence and crime? Why don’t we ever report anything good?
Even when there’s good news to report, why do we twist it so that it becomes bad news?
I am stepping down off of my soapbox with just one tidbit of information:
Leukemia deaths are down. Good job, leukemia scientists!
I cry a lot lately.
I don’t know how often, or why, or even what causes it – but I can pinpoint when it started.
It started with childbirth.
I suppose I could blame hormones, although blaming anything for 15 years doesn’t make a lot of sense. Ever since Dylan was born – and equally so with Shane – I cry so easily, so frequently, it’s like there’s a river of tears just rushing around behind my eyes, and they escape without any true provocation.
I cry when my child does something wonderful. Oddly, I cry less often when my child does something that hurts. I used to cry when my kids got shots – but only if they cried. This, I learned, didn’t help matters.
So I have limited my crying more to the wonderful things, like when they are singing, or being funny, or just doing an incredibly good job. Then I cry.
I also cry during TV shows – sometimes not even sappy TV shows, but at sappy moments during intense dramas. I cry when a child gets hurt on TV. I cry when a child on TV is sad. I cry when a TV mom is worried about her children. I cry during all Disney movies.
Luckily, I haven’t seen Bambi since the children were born. I don’t think I could survive it.
I cry during touching commercials. This is particularly embarrassing, but I just blame the background music.
Which brings me to another point: I cry most often when there is music. I cry when I hear a new song, and Shane is sharing it with me. I cry when I hear an old song, and Dylan is singing along. I cry when I think about an old song, and how long it’s been since I heard it, and how sad it is that my kids don’t know it.
I cry when there’s a remake of an old song, and they’ve turned it into a new song, and my kids know the remake, but I don’t. I cry because I know the world has moved on so fast and furiously that my kids are hearing remakes of remakes, and they think the songs are new.
I cry because the world is moving on so fast.
I cry because no matter how fast it moves, I can’t slow it down for one second. I cry because I am so incredibly moved by a moment in time – one moment, any moment – that I hope to remember forever, even as I am watching it slip away.
I cry because it slips away, and because I know it always will. I cry because I can’t catch it, can’t hang onto it, can’t make every moment stay longer. I cry because I can’t hold on.
I cry because I love these moments with my children so much, so painfully much, that I want them to last forever.
And they can’t.
And that’s okay, because it’s not my job to make the world stop. It’s not my job to make time stop. And no matter how much I wish time would slow down, just let me appreciate it for a moment longer, the best I can do is to take snapshots and make memories and write them down and soak in every moment I can, even as those moments are passing me by.
I cry because I can’t stop time.
My job, apparently, is just to watch it go.
