I bought a new kind of hand soap. It’s dye-free, animal-testing-free, non-toxic and naturally plant-based. I love that kind of stuff, but I got really lucky with this.
It also smells great. I went through a phase this summer that caused me to start buying everything I could find with a lemony scent. I bought lemon shampoo and really liked it, and it just spread from there.
Normally, this wouldn’t make it into a parenting blog.
But one day, I was sitting in my home office which is right next to the kitchen, and Dylan was cooking frozen pizzas in the kitchen. He had a friend over, and decided he would make lunch for the two of them. (Dylan can “cook” nearly any processed food now. I am so proud.)
As he was goofing around with his friend in the kitchen, I heard the water running. I didn’t think anything of it. About three minutes later, I heard the water running again.
Then Dylan said to his friend, “Why am I washing my hands again?”
“I don’t know,” said his friend. “Maybe they’re just really dirty.”
“No,” Dylan said. “I think it’s this new soap. It just smells so good, I thought I’d wash my hands twice.”
In the office, I perked up. Was Dylan actually complimenting something in the house?
“Seriously,” Dylan was saying. “It smells like lemons! Smell it!”
Indeed, he was complimenting something in the house. Dylan likes the new soap. To put this into perspective, Dylan has never once told me he likes the new soap. He does occasionally (now that I have begged him) say “thank you” when I make him a meal. And he is never terribly rude about trying a new product.
But this was new. He complimented something.
He doesn’t even know I heard him. But I will probably buy this hand soap for the rest of my existence here on earth, since – at least for one moment – it will remind me of this happy moment.
Shane is not an overtly emotional person. If anything, the word “reserved” is an understatement.
So-called “bad” things seem to roll off of him, or even over him. And while he does process these things, he almost always considers them with intelligence and rationality. Shane rarely gets upset, and when he does get angry or sad, he deals with his emotions on a personal level. Then he moves on.
In other words, emotionally speaking, Shane is the most mature person I’ve ever met.
But I am watching from the sidelines as his increasingly rare “wants” are all-but ignored. It starts at home, with Shane’s parents spending most of their time and energy on things other than Shane. While Shane entertains himself, his parents are on the phone, the computer, and working elsewhere. On the occasions when their time isn’t already taken on themselves, their energies are almost always focused on Dylan’s wants, needs and happiness.
Meanwhile, Shane has only a few interests – one of which is rock climbing. Last year, he took rock climbing lessons – and loved them. Unfortunately, he aged out of the class while still a beginner, and wasn’t practiced enough to get into any of the teen leagues – so he had to give up rock climbing.
A similar plight happened two years ago, when Shane was incredibly excited – for the first time ever – to learn how to play baseball. He got a new glove and practiced throwing in the yard. He took an hour’s worth of batting lessons at a local cage.
But they only had enough players for two teams. The “other” moms and dads didn’t want to watch games between the same two teams every week, so they canceled the entire season.
Shane didn’t ask to play baseball again. And he won’t have a chance to do any rock climbing until he joins the high school club (if he still wants to do that by then).
We also signed him up for a comedy/acting class this fall. I got an email last week that said the class “may be canceled due to low enrollment.”
Given our history, I was genuinely surprised when they decided they had enough people enrolled after all! It was a glorious day.
After warning him about the possible impending doom last week, I texted right away when I got the news: “Shane! The comedy class is ON!”
Several minutes later, a texted came in from Shane. “Okie,” it said. (That’s as enthused as he gets.)
And Shane is going to play ping pong again for the winter session. Shane loves ping pong. We are fortunate enough to live near a world-famous table tennis center – one that has actually trained champions and Olympians in the art of ping pong.
My pessimism, however, is getting the best of me. I expect that, sometime soon, the Olympic-ping-pong-training center will suddenly decide to make a move, taking its entire organization and reputation far away – maybe to California, or New York.
It’s just the way things go for Shane.
It seems not quite possible – but it happened again.
Shane has been riding the bus home from school since the beginning of sixth grade. He is now in eighth grade. So for more than two full years, he has had the same bus driver. Occasionally she is absent, but otherwise she drives the bus every day.
I drive him to school in the morning, but he rides the bus home almost every day.
So every day at 3:00, Shane goes to his locker, grabs his backpack, shoves his stuff into it, and races to get on the school bus. The buses don’t wait for long – they are all gone before 3:10 – but he knows how much time he has, and he has mastered the art of getting to the bus on time.
And every day, he jumps onto the bus, finds a seat, and rides to his bus stop.
Then, he gets off the bus and walks from the bus stop to his house.
Every day he does this.
School is scheduled for 180 days per year, so he rode the bus about 360 times during sixth and seventh grade. And it’s already November of eighth grade, so Shane has ridden the same bus approximately 400 times.
And yet, when he got onto the bus last week, the bus driver stopped him.
“You don’t ride this bus,” she said.
The bus driver didn’t recognize him.
While Dylan was feverish and housebound, I emailed his case manager. She emailed the teachers. I emailed the teachers. I emailed some of the teachers more than once. Then, after several days, I emailed the principal. I emailed Dylan’s counselor – twice. Someone even contacted the attendance secretary so that she would stop leaving automated messages on our phone, reminding me that Dylan was absent.
I did everything I could to make sure the teachers knew: Dylan was going to need some help when he got back. He was going to need some extra time, some excused assignments, some help from everyone.
But Dylan didn’t see it that way. He went right back to business as usual – which is to say, he went back to doing virtually nothing.
After a week of Dylan sick and me in charge of school stuff again, I lost my cool. In fact, I completely blew up.
“I have been doing everything, Dylan!” I yelled. “While you were lying on the couch and couldn’t even lift up your head, I emailed your teachers! I emailed your case manager! I emailed your counselor! I even emailed your principal!”
I went on and on and on, about all the stuff I’d done – how hard I’d worked, how many times I checked his grades online, how much I’d done … for him.
I should have been more cognizant. The things I do “for him” are no longer helpful.
Still, I wanted Dylan to take note. I wanted him to step up and do what he needed to do, since I’d done so much … for him.
So I kept ranting. “I did everything for you – for a week! I made sure everyone knew what was going on, and I made sure you knew what you were supposed to be working on! I did everything I could to make sure that you don’t fail this quarter!”
Dylan stared blankly into space. He said nothing. So I kept going. I tried a calmer approach.
“I want you to understand, Son,” I said. “I feel like I have been holding your head above water for a whole week! And now I’ve let you go, and I’m afraid you’re going to drown!”
Dylan finally looked at me. He didn’t blink.
“I know how to swim,” he said.
While I have always worried about Dylan, the past week put things into perspective for me.
Dylan was sick. He was so sick, and the doctors were so befuddled, that I started to worry. I worried that he might have something awful – worse than just a fleeting virus – and that he wouldn’t snap back. I worried that he’d end up in the hospital. I worried that he’d end up in the morgue.
And worst of all, I worried that I’d done everything wrong in his life.
I thought about the countless hours I’ve spent researching ADHD and trying to find a way for him to survive in school. I thought about Montessori school and how it might have solved all of his problems. I thought about school, and how hard it’s been for him, how much he’s hated it, how he’s dreaded every, single day of his life sitting at a desk in a classroom and listening to “blah blah blah” from the front of the room.
I thought about first grade, when he’d written in his journal, “I hate school.” I thought about putting him in private school and how, even there, he didn’t want to be there. I thought about the law – the requirement that all kids be “schooled.”
I thought about the many, many times I’ve offered to homeschool him. I thought about how he always refused, preferring to be in a social environment, even though it meant occasional failures.
I thought about my dad, who once said, “I knew that if I put my kids in public school, they’d be able to handle anything.”
And his kids, me included, turned into fine adults.
But if Dylan died at age 16, would it have been worthwhile? Would it have been what I wanted for him? It certainly isn’t what Dylan wanted for himself.
As painful as it’s been, every day thus far has been to prepare Dylan for his adult life. He’s learned some tough lessons – and he’s come out victorious with regard to so many, many things. He’s giving it all he’s got, and he’s turning into a mature, responsible human being.
Really, that’s all I wanted for him.
And the missing work? The piles and piles and piles of missing work – well, it’s just stuff. It might have caused him to get worse grades than any of us wanted for him, given his brilliance. His ADHD has taken his “GT” and made him only slightly above average – at least, that’s the way it looks on paper.
But paper isn’t actually what matters. Missing work doesn’t matter. Grades don’t matter.
What matters is that Dylan is healthy and happy now, and that he becomes a happy and healthy adult.
Really, that’s all there is.
Dylan is BETTER.
After a week in a fetal position, lying on the couch, sleeping and sleeping and sleeping, with a fever of upwards of 103 every day… Dylan is finally feeling better.
The fever is gone. I feel like shouting from the rooftops: THE FEVER IS GONE!
On Sunday, he developed a bizarre rash. It started as spots on his chest, then developed into a huge, splotchy thing that crawled up his neck and all over his torso, down onto his legs.
We took him to the doctor. They’d never seen anything like it.
“It’s a viral rash,” they said. “But we don’t know what kind of virus.” They whispered amongst themselves.
They ruled out strep and flu. They said maybe measles or rubella. “It’s rare,” they said. “But you can get these things even if you’ve been vaccinated.”
They said, “We need to get some blood work done to find out more.”
The doctors called the CDC – the governmental agency that monitors rare and unidentified illnesses. We had to wait for a call back, so that the doctors would know what to check for, when they did the blood work.
I wanted to vomit.
“Could he have ebola?” I asked. “Or West Nile virus?”
“No,” they said.
I thanked God. I thanked God again. We waited for the CDC to call back.
Why didn’t the doctors know what was wrong with my son? He’s had Rocky Mountain Spotted Fever already. He has the little-known Reactive Airways Disease. And they diagnosed both of those. They are good doctors.
So why didn’t they know? And why did Dylan still have a fever after almost a week?
But today, the fever is gone.
The rash had a small, localized reoccurrence last night, but it’s gone, too.
The blood work is done. We don’t have the results. We don’t know what it is, or what it was, or even if it will return. We don’t know if he’s still contagious, or if he was contagious, or if his family will need to be re-vaccinated for measles.
But I am overjoyed. I am thanking God. I am dancing around the room (in my head). I am shouting to the world: “He is better!”
I don’t know for sure. I don’t know what it is, what it was, or if it will return.
So today, for now at least, I am rejoicing.
Dylan had a fever for four solid days.
Every day, he could barely lift his head off of the pillow. He would get up and go downstairs in the morning. He’d watch television for two or three hours, but then he’d fall asleep. He ate almost nothing, and didn’t want to sit up to drink the liquids he so desperately needed. He choked down some ginger ale and maybe two glasses of water. All day.
During his four days of agony, Dylan slept about 16 hours a day. He kept going to bed earlier and earlier until, on Saturday, he went to bed at 6 p.m.
He missed being a local scarer every, single day of the “mandatory” weekend – the biggest weekend of his year. It was incredibly sad.
During this time, I gave him Tylenol to help him sleep, hovered enough to know he wasn’t going to eat or drink much of anything, and took him to the doctor – who ruled out mono, flu and strep. I got a flu shot while I was there, just in case.
The doctor said that sometimes a virus just needs to run its course. But I didn’t have much patience for a virus “running its course.” I prayed and prayed and prayed. I texted and emailed my mom all day long with updates. By Saturday night, when he was still feverish at 11:00 and had been sleeping for another five straight hours, I hit my knees.
I begged God to keep Dylan healthy. And even as I did so, I knew that it wasn’t my choice to make. People pray all the time for people to be healed from things much worse than a slow-moving virus. And not everyone gets what they want.
But on Sunday morning, Dylan woke up before I did. (I slept very late.) He went downstairs and got some water and pineapple juice – and drank them. He went into the fridge and pulled out some leftover pizza, and reheated it. He ate three slices, drank some more water, took his vitamins – and then went upstairs to take a shower and do homework.
For sure, I thought, he is better.
But he is not better. His fever came back in the late afternoon. By evening, it was more than 103. He was in bed – again – by 8:00.
I am thinking about his school work, how much he has to do, how little time there is left in the quarter. I have emailed his teachers and his case manager. I am doing what I can to make sure they know the extent of this illness.
But I don’t care about his school work. I just want him to get better. I want the fever to go away. I want him to wake up well, and stay well.
I will be praying again tonight.
We tried something new this week for Dylan.
Dylan had turned in all of his missing work, but his grades hadn’t changed online. This is because teachers have better things to do than grade all of his missing work in ten minutes, recording the grades online, and making sure Dylan gets what Dylan needs.
Dylan, on the other hand, having finally done what he was supposed to do, expected this of them – and for a second, so did I.
“If you really turned this in,” I asked, “why didn’t the zeros disappear online?”
I had handwritten notes from his teachers, stating exactly what he’d done – and everything was turned in.
So I emailed his case manager, both of us a bit panicked that we wouldn’t know if Dylan had all B’s in his classes or not. She called me.
“I will take a snapshot of his grades right now,” she said. “And I will tell him that he is not allowed to have any new zeros if he wants to work next weekend.”
“Next” weekend is this weekend. And it’s Halloween weekend. It’s the biggest event of the year for Dylan – six straight days of face paint and screaming.
“Okay,” I said to the case manager.
New zeros started popping up immediately. The next day there was one. Two days later, there were four. I stopped counting by Monday, and his deadline was Wednesday.
As always, Dylan said he was “getting it all done.”
Sure enough, he got it all done. Again this week, Dylan did everything in one day, bringing home a stack of notes from a slew of teachers.
And then he got sick.
The day he finished everything, he came home with chills and wanted to take a nap.
I told him to stay awake for three hours, and then he was allowed to sleep. So he stayed awake for three hours – and then he went upstairs, crawled under his covers, and slept until morning.
When he woke up Thursday morning, he desperately wanted to go to school. He said he felt better, and he tried to take a shower – but he just couldn’t do it. After all the “catching up” he did at school, and all the late nights he’s been working, and all the nights he’s stayed up “chatting” on his phone…
He just crashed. And now, even though he is allowed to work, he can’t. His body won’t cooperate.
I am praying for a speedy recovery – not only so he can work, but so he can catch up in school – again.
He’s just missed two days of assignments in every class, and the quarter ends next week.
Dylan texted me from school:
“My teacher is refusing to let me type my warm ups even though I asked 3 times and explained my accommodations.
Her reasoning: ‘I don’t want to have to go into email for yours when everyone else’s is written.'”
Dylan hates warm-ups. They are his albatross. They are mundane work, meant to get the kids engaged in class as they enter – but they are agonizing for Dylan. He wants hands-on learning, not routine writing assignments. Warm-ups are the equivalent of coloring pages in preschool, which Dylan also hated. He used to scribble a few red lines on his picture, then head straight for the building blocks.
He has always had serious trouble with writing utensils.
Dylan needs to type his work. He’s actually incapable of hand-writing anything more than a few words, because his hands can’t keep up with what his brain is telling him to write. If he’s spending all his energy trying to hold a pencil and form words, the other thoughts in his brain fly right out the window. After he writes one word, he has to start all over again thinking about what he needs to write.
It’s a very common trait of kids with ADHD. And Dylan has an IEP that outlines this, and provides him with a computer whenever he needs to write more than a few words.
I started to freak out. Mom-of-3rd-Grade-Dylan returned with a vengeance. I almost got in the car and drove to the school, like I used to, but then I took a breath.
Instead, I had a conversation with myself.
I am supposed to let Dylan handle this.
But Dylan is trying to handle this – and his teacher is refusing to allow his accommodations! I should go talk to her right now!
Wait – there is another way. He has an IEP, and he has a case manager who can enforce accommodations.
A-ha! He already has help! I will remind him.
So I texted back:
“GO SEE YOUR CASE MANAGER IMMEDIATELY. That is NOT okay!”
“okay, I’ll go see her”
“good job self-advocating! you did the right thing!”
I felt bad for him, doing everything he was taught to do, then having his teacher refuse to give him the simple things he needs to succeed.
I thought about college, where there will be no case managers, no IEPs, and no mom around to storm the castle.
But then I remembered my classes in college. There wasn’t a single second to spare. I walked in, sat down and started learning.
So I sent one more text.
“good news: no warm-ups in college”
Shane came home from church, excited about the rest of his day.
“You have ping pong lessons,” I said to him. Shane loves ping pong. He’s started taking it seriously, and improved by leaps and bounds in a matter of weeks.
“I know,” he said. “Then am I going anywhere?”
I told him he was going to the local haunted trails with Bill after ping pong. A whole evening of fun-filled haunts awaited him. “AND…” I said, emphasizing the very exciting next point I wanted to make. “You can get ice cream after ping pong if you want!”
“No ice cream!” Shane said, shocking everyone within hearing range.
NO ice cream? What kind of kid says “no” to ice cream? And more confusing – since when has Shane ever refused ice cream?
“Why not?” I asked. “Why don’t you want ice cream?”
“Well, I had two cookies at church already,” Shane said. “And I want to buy a soda at the concession stand later.”
He was monitoring his sugar intake.
This is not new for Shane, really. He rarely refuses ice cream, but he is very careful about how much sugar he eats. He still eats too much, but he is very aware of how much sugar, exactly, he eats every day.
So on this day, he had already consumed some cookies – and it was barely noon. Then later, he bought a soda and drank about half of it. He saved the rest for later.
Sometimes he gets a sweetened ice tea in his lunchbox. It takes him about a week to finish one 12-ounce bottle.
For me, sugar is a problem. I see it; I eat it. I don’t have a regulator. If I quit eating sugar for a few days, I am less likely to be tempted by it. But I rarely eat anything – especially sugar – in moderation.
Shane is teaching me new things every day. When I grow up, I want to be more like him.