Month: July 2015
After much research in attempting to discover what is wrong with Shane, I’ve once again learned that he’s … well, he’s just like that.
After the whole envelope debacle, and my sudden raging concern that Shane has an undiagnosed learning disability, I did some research. I read about left-right confusion, about doing things backwards, about being absurdly literal.
So I started with autism-spectrum disorders.
The tendency toward the literal is very much associated with Asperger’s Syndrome. For what is maybe the 40th time, I took quiz after quiz online, just to be sure that Shane doesn’t have Asperger’s.
I read about the various levels of Asperger’s – in case he is just incredibly high-functioning. There are five defined levels – and Shane doesn’t fit into any of those categories. He simply takes everything very, very literally.
So I moved to left-right confusion.
I studied the brain. I learned that most left-right confusion comes from disorders in the left parietal lobe. I learned a lot about disorders along the autism spectrum, including ADHD, since they are thought to originate in the parietal lobes. And there are a dozen or more incredibly rare disorders that are also associated with left parietal lobe dysfunction.
Those parietal lobes are pretty important things.
Shane does not have Gerstmann’s Syndrome, Balint’s Syndrome, Holmes-Adie Syndrome, Creutzfeldt-Jakob Disease, Apraxia or a brain tumor. In fact, he doesn’t seem to have any kind of disorder at all.
This is great (and not unexpected) news. But it doesn’t explain why Shane threw a light bulb randomly across the room, instead of “tossing” it in the garbage. And it doesn’t explain why he can’t address an envelope while looking directly at a sample envelope.
The most helpful tip I got was from a blogger who suffers with severe left-right confusion – and has, for her entire life. Her post discussed the parietal lobes, too, but then suggested:
Her blog went into detail, describing the various personality types – all based on the Myers-Briggs test, which Shane has never taken. But I have no doubt that Shane is an NT personality.
So I researched personality types.
Shane fits flawlessly into the INTJ category: introspective, analytical, determined, adaptable, open-minded and decisive. Reading about the personality types renewed my hope for Shane, who fit so nicely into this category that I don’t think he will even need to take the test.
INTJ personality types – and “NT” people in particular – are quite rare in our population. As adults, they are generally quite content with their work and their lives.
But it does mean that Shane’s personality is … unusual. And of course, I knew that all along.
So I will just go back to believing Shane is fine, just the way he is… and, as often as possible, I will try to see his oddities as learning opportunities.
Shane is perfect, just as he is. I really don’t want him to change.
But I don’t want him to suffer. And I think he is going to suffer, if we don’t figure out exactly what is going wrong in his head, and how he can work around it to successfully proceed through life.
Thinking about Shane’s “issue” is quite frustrating, because I’ve tried all the regular channels – and been told repeatedly that I shouldn’t worry about him.
But I do worry.
I asked the pediatrician about Shane during his annual physical. I told him the story of Shane literally tossing the light bulb and smashing it on the garage floor, when my husband said “just toss it” and meant for Shane to discard it. “There are other things, too,” I told the doctor.
The doctor laughed. “Quite honestly,” he said, “he’ll probably just outgrow most of that.”
I trust my pediatrician. He saved Dylan’s life, when Dylan had rocky mountain spotted fever. But if Shane is “tossing” a light bulb across the room at age 10, how long should we wait for him to outgrow his tendency toward the extreme literal?
I also spent some time with the special ed staff at school. We called a meeting to discuss Shane’s odd needs. He’d already been through vision therapy, but he couldn’t spell anything – and I thought we might need to alert his future teachers that he was, actually, quite brilliant. He simply can’t spell.
His teachers – and the special ed staff – didn’t need to be told that Shane was brilliant. They had his paperwork there as proof. They talked about how carefully he followed instructions. They talked about his high test scores, his good behavior, and his advanced-level thinking.
The reading resource specialist spent the entire meeting reading Shane’s journal, raving about its contents. “His writing is superb!” she said. “If only all the students could write like this!” She gushed over his writing until even I felt silly for holding that meeting.
But then I think about that crazily assembled envelope again, about him tossing the light bulb across the room. And I remember the many times I asked Shane something incredibly simple, but he had absolutely no idea what I was saying – and he tried so desperately to understand what I said.
And I wonder: how long before Shane’s problem affects his school work? Will it happen in middle school? Is it getting worse or better? Is he really going to outgrow something that feels so much like a part of his personality?
I wonder how much of my concern stems from Dylan, with his classic ADHD, his GT/LD profile, his extremely rare reactive airways disease and rocky mountain spotted fever. I think about how Dylan’s handwriting issues were so severe, Shane almost didn’t even get diagnosed with vision processing disorder because he wasn’t as bad as Dylan.
And then I wonder if Dylan has vision processing disorder, and not ADHD at all.
Then I think about my friend whose grown son was just diagnosed – at age 29 – with high-functioning Asperger’s Syndrome. Is it possible that all the times I took the Asperger’s quizzes online, the results just didn’t pick up Shane’s specific variation of Asperger’s?
What if he has something that hasn’t been defined yet? What if he suffers alone for decades, just because nobody knows why he can’t put an envelope together the right way?
Or what if his problem emerges as something physical, much later in life?
And what if there’s nothing wrong with him at all?
Some of Shane’s friends are at camp, so he wrote them letters. He likes to write; they like to get letters. It’s a win-win situation.
But then there’s the envelope.
Shane is 11 and has never addressed an envelope. Since Dylan is my first child, I taught him when he was 3 how to address an envelope and where to put the stamp and return address. But I figured Shane would just pick it up along the way.
He did not.
So I showed Shane a You Tube video, to peak his interest. Then I told him where to find the blank envelopes, return address labels and stamps, and left him alone with the instructions that if he did the stickers and stamps, I would write in the camp addresses.
When I came back, I found two envelopes on the table. They’d been flipped over, so that everything was stuck to the back of the envelope, with the open flap. The return address labels were in the upper right corner of the back of the envelope. And there were some flag stickers (not stamps) in the upper left corner of the back of the envelope.
While this was frustrating, I figured he just needed a little help, so I took his envelope to him and said, “Does this look right to you?”
He started to say yes – but then he looked, and realized he’d done the stickers backwards. Shane still didn’t notice that they were on the back of the envelope.
And that’s when I knew there was more to Shane’s vision processing disorder than just what he fixed through therapy.
When Shane was little, he couldn’t distinguish a lower-case ‘b’ from a ‘d.’ He wrote most of his numbers and letters backwards – but not always, and not always the same letters. He had tremendous difficulty reading because he wasn’t able to focus on the words. He’d rub his eyes, and strain, and try – but he just couldn’t do it.
Vision processing disorder meant that he could see fine – but he couldn’t properly translate what he saw to what he knew. But after his diagnosis and evaluation, and two years of twice-a-week therapy, he could read as well as anyone in his class.
Now his reading level is off the charts. He can’t spell – which is probably only partially attributed to vision processing disorder – but his writing and reading skills are exceptional.
But he can’t tell right from left, or back from front, on an envelope.
There have been other things, too – odd things, that just didn’t seem right. Shane is far from stupid, but I often find myself saying, “You need to actually use your brain.” And I am realizing, right here and now, that something is still going on in there, something that is making simple things difficult.
I just don’t know what it is.
I have a friend whose son is much like Dylan. He’s 17 now, and doing well.
The biggest difference in our parenting styles, I think, is that Randy’s parents go a step farther than I went with Dylan. I think about this often, when I think that I’m going too far in doing things for Dylan, instead of allowing him to do things for himself.
They wake him up for school, for example. How will Randy learn to get himself out of bed in college if his parents wake him up for high school? Dylan has an alarm, and he uses it – or he misses school.
Randy’s parents make his breakfast, lunch and dinner – every day. Dylan regularly makes his own lunch for school, and has been learning to cook since he was 10. For Easter, he made a pie for the family. Possibly more importantly, he knows how to make scrambled eggs with cheese for breakfast – high in protein, and loaded with choline for his brain. Dylan knows about food, because we’ve taught him. Randy eats almost nothing because nutrition is forced upon him, rather than taught to him.
Dylan may not turn in his homework, and he may not do it – but it is Dylan not doing the work. Randy’s parents sit with him to work on his homework. Still. At age 17. I can remember Randy’s mom saying they once did his homework for him, because he was too tired to do it and they didn’t want it to be turned in late.
And they stay up all night studying with him, whenever he needs that extra help in the wee hours of the morning. This is great practice, I guess, for the all-nighters in college. And Randy has been accepted to college – which, I’m sure, is partly thanks to his parents’ over-indulgence in Randy’s work.
But what is Randy going to do when he gets to college? Who is going to get him through those tough assignments when he can’t focus? Who is going to make sure he’s up in the morning and ready for class? Who will feed and clothe him? How will he learn to do these things for himself at age 18?
Sometimes I think I’m a great parent.
Many years ago, I had one yellow paper clip. In the midst of all the common silver clips, the yellow one was special.
Having been a secretary during my pre-mom years, I know that colored paper clips cost more than regular paper clips. But I liked their relatively thick texture, and how they made my paper bundles seem just a bit brighter. Even though I didn’t want to waste the money to buy them, I loved colored paper clips. So I used the yellow one as often as I could – and only if I was sure I’d get it back.
Even as a very young child, Shane noticed this.
One day, as I was going through his preschool papers with him, he said, “I have something else.” He dug around in his pocket. “My teacher said I could give this to you.”
Shane pulled out a colored paper clip. “Thank you!” I beamed, because I now had two colored paper clips.
A few years went by, and I collected a few more colored paper clips. Sometimes they would be related to my work. Sometimes Shane would bring one home for me.
Then, last year, Shane bought me a whole set of colored paper clips for Christmas. I couldn’t have been any happier if he’d bought me a car.
So today I was putting together some paperwork for an upcoming vacation, and I noticed that I had a colored paper clip on all eight sections of the travel itinerary. (The fact that I have eight sections tells a different story entirely.)
And while I didn’t say anything to Shane about it, I sure did think about him – his chubby little preschool hands reaching into his pocket for the paper clip he’d specifically requested as a gift for me. I thought about him wandering around alone in Target at age 10, and seeing those brightly colored clips on a shelf – thrilling to find that they were within his budgetary reach.
Mostly I thought about how he pays attention to what people like and, when deciding on a gift, considers what they might really want.
And while I’d love to take credit for instilling in him this wonderful quality, I have to admit: he was just born that way.
So now I can learn from him – again.
Our summer started with Dylan getting sick. We went camping anyway, and when we got home, Shane got sick. So our first two weeks of “vacation” were quite restful – and not much fun.
One night at 4 a.m., early in his illness, Shane woke me out of a dead sleep.
“Mom?” he said in the darkness. “I have a few issues.”
(The poor child remembers when he was a toddler, and he’d wake me from a sound sleep. I used to leap out of bed screeching, “WHAT?! Why did you wake me up?!” I was a terrible night nurse for a few years. Now, though, I am a bit more balanced and mature.)
“What are your issues?” I asked, sitting up and reaching for his hand as my eyes adjusted to the darkness. He sat next to me on the bed.
“Well, I haven’t been able to sleep since 2:00. Maybe I got a little sleep but I don’t know and it’s been two hours. And my throat is still scratchy but the worst part is that my heart is beating like this.”
Shane tapped a really fast beat on my leg. Really fast.
I put my hand on his heart which was, indeed, pounding very rapidly.
“Okay,” I said. “Take a deep, slow breath.” He did. “Now do it again.” He did it again. His heart slowed a bit, so I had a feeling that it was mostly psychological.
“You’re better at this than Daddy,” Shane said. “I woke him up at 2:00 and told him about my heart. I asked him if he thought I would be all right and he said, ‘yeah.’ And then he went back to sleep.”
I felt proud. My night nurse behavior had improved.
I gave Shane some medicine, then walked him back to his room. Having lived through a few panic attacks myself, I knew how to slow that heart back into a regular rhythm.
“Just close your eyes,” I said as he climbed back into his own bed. “I don’t want you to think about anything. Just be aware of your body and breathe.”
I stroked his face and his hair, and he relaxed. I admired his beautiful little face. I thought, He’ll be in college soon enough, and we won’t have these moments anymore.
Then I realized: He’ll be in middle school in three months, and we won’t have these moments anymore.
After half an hour, I kissed his forehead and told him to come and find me again if he needed me.
“Okay,” Shane whispered.
Then I went back to my room and spent another hour trying to get myself back to sleep.
Before Dylan went to private school, he was bullied mercilessly by a classmate. We’ll call the bully “Andy.”
Andy and Dylan had gone to kindergarten together, and even had playdates when they were younger. Dylan went into the GT program for two years and the boys lost touch. Then, for whatever reason, Andy decided to unleash his wrath on Dylan on the very first day of middle school.
Dylan didn’t tell me until months – maybe years – later.
Andy knocked Dylan’s books out of his hands, or punched him in the stomach – hard – whenever he saw Dylan in the hallway. Andy tried to slam Dylan’s head into his locker – but Dylan pulled the pin on the locker, causing the metal to slam backwards and hit Andy in the head instead.
I thought this was brilliant.
“I saw Andy doing it to other kids,” Dylan told me later, “so I figured out how to make it backfire when he tried it with me.”
We never reported these things to the school or to Andy’s parents because Dylan begged me to stay quiet.
Later I learned that Andy had been in plenty of trouble without any reporting from Dylan. So I figured it was fine that we’d kept quiet, although I felt odd seeing Andy’s parents around town and saying nothing.
Then I ran into Andy’s mom this summer, and we started talking about middle school.
She told me, “The people at the school were driving me crazy. They were calling me at work all the time! They called me because Andy threw gum at somebody. C’mon! You’re going to call me at work because Andy threw gum?”
I almost said nothing.
Then she said, “If you’re going to call me at work, at least call me for something that’s actually dangerous.”
Dangerous, I thought.
“Well, Andy slammed Dylan’s head in a locker,” I said. “And he knocked Dylan’s books out of his hands, and punched him in the stomach a few times.”
Andy’s mom didn’t even blink at these accusations. “Well, I didn’t even know about that!” she said.
“I didn’t either,” I said. “I didn’t find out about it until way later.”
And we kept right on talking, like moms sometimes do, as if nothing had ever happened.
But a great burden had been lifted from me.
Andy’s mom never apologized for her son’s behavior. In fact, I don’t think it even registered. She has no idea that her son was the class bully, that he abused so many kids.
She’s in complete denial – and I probably would be, too.
Dylan had a run-in with Andy after he went to private school. He tried to intimidate Dylan and Dylan just laughed.
“He’s just embarrassing himself,” Dylan told me later. “And that’s just how it’s going to be from now on.”
I’m not sure Dylan realized that Andy’s power had diminished not because Andy is less powerful, but because Dylan now has the power he needs to ignore Andy.
So I’m not worried about Dylan’s future, and I can face the past with a clearer conscience.
The power of a bully comes from suffering in silence. And Dylan’s bullying is not a secret anymore.
At least I told her, I think.
Whether or not she ever knows.
Shane won tickets to a Taylor Swift concert eight months ago.
Taylor Swift – who has, at minimum, nine huge pop hits – had two shows scheduled in D.C. “Which show are we going to?” we asked the radio station staff, who gave us the tickets.
“I think you’re going to the July 13th show,” she said, as I signed for them. Then the morning radio show ended and Shane got his picture taken with the disc jockeys, right in their studio! It was awesome.
We spent the following months planning for the concert. Taylor Swift is no small deal. First, Shane had to choose someone to take with him, because he only won two tickets. That was a six-month process – but in the end, he chose me. (I still feel flattered.)
Then we spent more than a month counting the days to Taylor Swift. The show was on Monday, July 13. We planned all of our summer activities around it. We knew we’d be out late – so we planned nothing for the next day, so everyone could sleep late. Bill had a meeting after work, so we also got someone to watch Dylan (thanks, Mom and Dad). We made sure we had plenty of time during the day to do absolutely nothing.
And finally the big day arrived: Monday, July 13.
I spent all day studying on the internet so we would have a safe and pleasant trip. We were taking the subway to the event, and had to plan to return on the subway with the other 44,809 people who would be riding the subway after the concert.
I made my plan. I took a five-minute nap. I forced the kids to do all of their chores before we left. I made peanut butter sandwiches and shoved them in our raincoat pockets. We took Dylan over to my parents’ house at 5:30, and raced out.
We had a fight with the subway fare machine, which ate my money. We got help from the guy who sits in the little bubble at the station, and finally got our fare cards loaded with appropriate fares. Then, finally, we started riding toward Washington, D.C.
Shane said, “Do you have the tickets?” He was kidding, of course, because we have had eight months to prepare, and I am the most prepared person on the face of the earth.
I said, “Yeah, do you want to take a look at them, and see what section our seats are in?” We’d done this, too, on the computer, on an interactive seating chart. We knew exactly where our seats were.
Shane said, “okay,” and I pulled out the tickets. Shane looked at them – something I have done ten times already, once that morning, even.
He said, “Oh look. The ticket says Tuesday, July 14.”
I thought he was kidding.
But no, he was not kidding. Taylor Swift had two shows – and we were on our way to the wrong one. After all those months of planning, it had never occurred to me to double check the date.
And we sure didn’t need to ride public transportation on Monday for a concert on Tuesday.
“Okay,” I said. “Let’s get off at the next stop!”
We had only traveled a few miles. We got off the subway, and walked to a nearby mall. We triple-checked the date on the tickets over dinner at the food court.
And then we went home.
The Taylor Swift concert the next day was, of course, spectacular.
I’d been asleep for less than an hour when, for some unknown reason, I popped up out of my bed to check on Dylan.
Some little voice in my head was just screaming, Go see what he’s doing!
So I headed down the hall, for whatever reason, and stood outside of his room. Something didn’t seem right, but it was pitch black and I had no idea what was out of place. I couldn’t tell if he was asleep or awake or even there.
So I turned on the hall light. And sure enough, there was this huge mound in the middle of the bed – not like a sleeping boy. I walked in and tossed the covers off of him. He tossed the covers back on quickly and I heard a familiar THUNK! – the sound of something hitting the floor.
He tried to hide it, but sure enough, the kid with the electronics limit of two hours per day was using electronics – at 1:00 in the morning.
“What are you doing?”
“Huh?” he said, as if he didn’t hear me.
“What was that?” As if I didn’t know.
“It was my iPad,” he said, hanging his head.
And then we talked for a long time about self-control and discipline – a conversation that was likely useless, since it took place in the middle of the night. And then I spent another hour tossing and turning, trying to get back to sleep.
And now we’re back to square one, where I can’t trust him again. Where he is hiding things from me. After all these weeks – two months! – of impeccable behavior, I now have to guess whether or not he is doing what he says he’s doing, being where he says he will be, and acting in a trustworthy manner.
I know, full well, that this is the way of teenagers. That they have to break free of their parents and move forth with their lives. I know that sometimes that means lying and doing other things that they won’t do as adults, just to prove that they can.
But I am tired of being the heavy-handed disciplinarian, the “only” Mom who limits electronic usage to “only” two hours a day – and the “only” one who forces her children to put away the screens at 10 p.m.
My question is this: why did I even get out of bed?
During Shane’s first day of middle school orientation, he and a dozen or so other children gathered together in a classroom.
The teacher – who has been doing this every summer for at least three years, and possibly 30 – said, “Raise your hand if you know anyone else in this room.”
Hands went up everywhere. Even though kids come to this middle school from five different elementary schools, everyone knew someone.
“Now keep your hand up if you know two or more people,” said the teacher. Some hands went down; Shane’s hand stayed up.
Shane had friends from both of his elementary schools, and knew two girls from church.
“Three or more?” said the teacher. Some hands went down; some stayed up. This went on for a few more moments, until the teacher got to eight. Shane’s hand stayed high in the air.
Then, in what was probably a foretelling moment for Shane’s middle school career, the teacher completely overlooked Shane and said, “All right, so everyone’s hand went down after eight.”
Then he moved on to something else.
And Shane – who is all about numbers, and accuracy, and who really did know more people than anyone else in the room – quietly put his hand down, and said nothing.
When he told me this story in the car, I said, “So did you say, ‘Hey, I still had my hand up!’?”
“No,” Shane said.
I sighed quietly to myself. “So who were all the people you knew?”
Shane rattled off a list of names. He was so excited to finally be able to tell someone all 10 names.
We drove home – him, none the wiser that he doesn’t have to remain invisible. And me, knowing that he will anyway.