When Shane was little, his kindergarten teacher said to me, “I love the way he thinks. He’s just so out-of-the-box!”
Out-of-the-box? I thought. He’s the first normal person in our whole family!
Then it hit me: Shane thinks like I do, so I deemed him “normal.” We are both a little off-center, a little bit too literal, and focus maybe a bit much on tiny details. But I adore having Shane in my life, in my family, and watching him grow – hearing what he thinks. His is the opinion I value most, because it’s often most in line with my own.
That doesn’t mean Shane is perfect. In fact, I often learn a great deal from Dylan, whose thinking is so often vehemently opposed to my own.
But I’ve always been interested in Shane, since he’s not only an out-of-the-box thinker, but more emotionally balanced than I ever was.
I thought maybe some of Shane’s personality was skewed in a positive way due to his vision processing disorder. He did everything so easily and perfectly when he was undergoing treatment!
The staff at the vision therapy center even called to see how Shane was doing at home, since he seemed so wildly well-adjusted at the center. They expected him to complain substantially more about his therapy exercises.
Shane never complained.
I’ve been taking Asperger’s tests online, for Shane, for as long as I can remember, because I knew something was going on with him. Longtime blog readers will know that I determined (without professional help) that Shane definitely has Nonverbal Learning Disorder – which explained many of his symptoms, but also gave him some symptoms Shane didn’t have. I’m still not sure if I was right on that one.
I wondered, and wondered, and wondered: What is going on with Shane?
And then, when it came right down to it, Shane had to tell me. No matter how hard I looked, no matter how much I guessed, I couldn’t figure out how to solve the puzzle without some substantial clues from Shane.
I’m so proud of him for talking to me, after being bothered for so long about what was bothering him. He didn’t know enough about OCD to know that’s what was going on, in his brain, in his life. He had to tell me what he was thinking – how he was thinking – before I could even suspect OCD.
And at the same time, I’m so incredibly saddened that I didn’t see it, didn’t know it, didn’t even guess it, until Shane told me. How could I not recognize such a huge thing in my own child?
A friend told me, when I confided my angst, that it’s not so much that I didn’t recognize the OCD as I “embraced it” as being simply Shane. And that’s true: I just chalked it up to being part of his personality, and loved it along with everything else.
This tiny statement from my friend made me feel so much better.
But what about the great likelihood that I have OCD, too, and never knew it? I don’t know if my having OCD – if I do – made it easier to recognize, or harder to recognize, in Shane. And I sure don’t embrace anything in myself.
For Shane’s sake, I am glad he’s able to move right into treatment – a pretty simple, flexible treatment – and get help for what’s been ailing him.
I just wish I would have known about it sooner, so he wouldn’t have had to suffer alone.
Dylan came downstairs this morning and said, “Every day I come down here and wonder, where’s Shane?”
Shane, of course, is still at school. Dylan finished his school year several weeks before the rest of the students which, I assume, cuts down on senior skipping and the like. I mean, all the seniors are already done with school long before it’s over. How could they rebel against that?
Dylan secured a summer job in spite of his insane schedule, but he doesn’t train for that job until just before school lets out. He’s working as a host for a zip line park, so the customers start swarming in after the school year ends.
So Dylan stays in his room until noon. He plays video games at night. He’s got no homework, no studying, no job. He’s free of responsibilities for the first time in eons and he loves it.
But he might want to consider preparing for college. There are music placement tests to take in a couple of weeks, for example. Since he wants to major in music, he might want to prepare for those. But he doesn’t.
He has to pare down his belongings from the size of a mountain to a size that will fit in the back of a Honda Pilot – and still last him a year. He’s got a paperwork mound in his room that started growing sometime in kindergarten, but he doesn’t want to go through that – or anything else. And he’s got two months before he goes to school.
Still, it’s only been a week since school ended forever – and I can’t see any reason to declare that he “must” do much of anything. In fact, he’s not going to have me pointing him in the right direction in a few months, so who would it help?
Besides, he deserves some down time. His job will start soon enough and we can worry about cleaning out and packing up sometime between shifts.
I’m going to let the boy rest for awhile.
One evening, late, Shane texted me: Can you come upstairs, please?
Shane rarely asks me to visit him. In fact, this may have been the first time. I went straight into his room without knocking. “Are you okay?”
He didn’t respond, but he was lying quietly on his bed, clearly upset. Shane was not okay.
It took awhile, but finally he started to talk. He talked about how he was struggling with reading, that it felt like he could never get through a paragraph. He talked about an obsession with crimes – and how to be sure he wasn’t committing any. And he talked about his phone, which he kept under his sheets.
“Do you know why I keep it there?” he asked.
“I thought you didn’t want to be distracted by it,” I said.
“It’s because I think somebody can see through the camera lens,” he said. “I know they can’t, but I can’t keep the camera on top of the sheets because I’m worried that someone could be watching me.”
And that’s when the light bulb went on over my head.
“You know nobody is watching you, but you do it anyway?”
“Yeah,” Shane said. “And I don’t know how to not do it.“
Never before that moment had I suspected Shane had Obsessive Compulsive Disorder (OCD). And then, just like that, I knew he did.
I gave him some suggestions: things he could do right away to alleviate the stress of feeling horrible about doing things that didn’t seem “normal.” He could concentrate on some positive things, make a gratitude list, take deep breaths and be proud of himself for talking about what was bothering him.
“Tell you what,” I said. “I’m going to find a quiz online for you to take, and one way or another, we’ll find someone who can help you learn how to handle what’s bothering you.”
I found a quiz on PsychCentral, and Shane took it immediately. With 12 being the lowest possible OCD score, Shane scored 19. The site said:
Based upon your responses to this screening measure, you are most likely suffering from an obsessive-compulsive disorder…. This is not a diagnosis, or a recommendation for treatment. However, it would be advisable and likely beneficial for you to seek a professional diagnosis from a trained mental health professional in your community immediately.
We talked a bit more, and Shane felt comfortable moving forward to find a therapist. I started looking and found someone within a couple of hours, so we were able to set an appointment pretty quickly.
But I couldn’t shake the feeling that I’d always thought Shane’s obsessive thoughts were – well, normal. I’d been just like him growing up, and what he did was an awful lot like what I did. In fact, sometimes my obsessions were a bit more extreme.
So before I went to bed, I took the OCD quiz for myself. I got a 17.
When Dylan was young – 11 or 12 years old – we visited our local high school. When we pulled into the parking lot, I had an idea.
“Hey,” I said, thinking that someday I would want this, “let me take a picture.”
I propped Dylan in front of the school, next to the minivan. With great glee and anticipation I said, “One day, you’re going to be big! And you’re going to GO to this school!”
Today, that photo popped up as a featured memory on my Facebook page.
I posted it two years ago – seemingly a lifetime – when I realized that Dylan only had two years left in high school.
But the photo popping up on Facebook today, of all days, couldn’t have been more timely.
Dylan’s high school career is now officially over. On Friday, Dylan got up, drove to school with Shane, and went to one class. After first period, he and the other seniors all just … left.
And that was Dylan’s last day of school.
It was his last time, ever, waking up to do the thing he hated most in the entire world.
He talked today about “senior-itis,” the very real feeling that there was no purpose in his attending school anymore, let alone doing any work. Dylan had senior-itis starting sometime in sixth grade, but he could only claim it for the past few months.
But Dylan made it – he didn’t quit. He didn’t skip school, do drugs, get caught up with the wrong crowd, deface school property or assault any teachers. He just bided his time – the equivalent of his prison sentence – and came out with a B average and acceptances to seven different colleges.
In other words, Dylan did okay. In fact, he did great.
Dylan got big. He went to that school. And now he’s done.
I remember that Dylan didn’t want to get his picture taken that day. “It’s not my school yet,” he whined. “And I don’t even like school.”
To Dylan, school was 260 days a year of agony. It was day after day after day of sheer pain. Day after day, year after year, he plodded on – and through – just trying to hang in there until graduation.
And to me, it happened in the blink of an eye.
One morning, while casually putting away the milk, Shane said, “I think the world would be a better place if everyone would just be nice to each other all the time. I don’t know why nobody’s thought of this sooner.”
This, I thought, is the reason Shane is so funny. I laughed aloud, then went on with my life.
Often, Shane is joking around – and often it is very funny. But other times, Shane will say something similarly hysterical.
Like we were listening to the radio and the song was listed as Happy Happy Birt – because that’s how much space was on the screen. I mentioned that it must be someone’s birthday, Shane said, “No, this song is just called Happy Happy Birt.”
And I laughed, then started singing along with the (very, very old) song: “Happy, happy birthday, Baby…”
And Shane said, quite surprised, “Oh, I actually thought the song was called Happy Happy Birt.” And – I think – he was serious.
But who can tell? Even I don’t always know when he’s being his jovial, funny self, and when he just doesn’t understand something.
Worse yet, I’ve been really trying to discern the difference, and I can’t.
I know that I didn’t do as well with Shane as I did with Dylan, at least with regard to answering questions. I spent ten years answering Dylan’s questions, to the very best of my ability, but somehow I just expected Shane to know things.
Shane was quieter, and didn’t ask as many questions. While he absorbed what was said, and calculated answers on his own, he didn’t bother asking for answers when he was confused. Sometimes he would give up on thinking about things because it didn’t matter to him all that much.
And as a result, sometimes he’s still confused.
Sometimes he doesn’t know the simplest things – what a screwdriver does, or why propping up your head makes it easier to breathe with a cold.
But sometimes he’s light-years ahead of where he should be, like when he was nine and told the whole tour bus how to say “how are you” in Chinese – when we were in China and nobody else knew. Or when he realizes that the key to world peace is to just be nice to one another.
And sometimes Shane’s so funny because he’s so brilliant.
But at any given moment, I don’t know when Shane is confused and when he’s brilliant. Most often, I think he’s incredibly funny. I laugh, and offend him, and then answer his question – whatever it may be.
But I don’t want to keep offending him. And I don’t want to let him down if he actually needs an answer. At his age, every question is a good one.
I keep trying. I just hope that, someday, I’ll be able to actually help.
Decades ago, when I was very young – or at least, felt very much younger – I used to frequent some weekend dances at a local rec center. In the early 90’s, the dances were a big part of my social scene. I’d given up the bars and the wild life, and settled into a more easy-going lifestyle.
And I was still young enough to really dance. I loved the music of the day – whatever it was – and flailed around on the dance floor with the other dancers to the best of my ability. When the Electric Boogie played, I screamed with excitement and raced out to electrically slide and spin until I was nearly crying with glee. I had the time of my life dancing to that song.
The only thing that made my dancing experience better happened around 1993, when this guy I knew started appearing regularly at the dances. He hung around in the kitchen, helping the folks who ran the dance, and he spent a lot of time talking to people who needed a dancing break. When I talked to him, he always laughed at my jokes – and most people didn’t really understand my humor. But this guy did.
Eventually, he danced with me. He didn’t slide or do the line dances. In fact, he was a swing dancer. I had no idea what swing dancing was, but I would wander out onto the floor with him and laugh until my sides hurt. Long before the days of “So You Think You Can Dance,” he would spin me around and dip me like a pro. I just tried to remain upright as I was beaming and flying across the floor.
I danced with this guy every week and, eventually, I spent more time hanging out in the kitchen with him than I spent dancing with anyone else. After a couple of years, the dances kind of faded out – but it was okay. I married the guy.
Bill and I fell in love at that rec center; at least, I fell in love with him. My visions of him – those memories – are still so sharp that when I pass by that rec center, where those dances are now a thing of the past, I can still see Bill standing there, smiling.
This past weekend, I walked into that rec center for the first time in years, along with my 18-year-old son. This weekend, it was the site of my son’s After Prom Party – a thought I simply could not have imagined 20 years ago as I was sliding across that dance floor in 1993.
Dylan had a wonderful time, and the venue was perfect for the party. But I find it hard to believe that the After Prom Party was as perfect for Dylan as it was for his dad and me, all those years ago.
Tonight, Dylan goes to prom.
My little, tiny baby Dylan is going to shave and put on a tuxedo. He’s going to take his girlfriend to a fancy dinner and dance. If it were up to him (it’s not), he would drive his own limo. Maybe one of those Hummer limos. And he will be out all night, enjoying the last dance of his school career.
My little, tiny baby Dylan is all grown up.
No one believes me when I tell them something is up with Shane.
But something is up with Shane.
Since no one has come up with any kind of new “disorder” or “learning ailment,” I have been on my own, trying to figure it out. I have taken the Asperger’s quizzes online about two dozen times, because Shane’s “issue” so closely mimics Asperger’s – in some ways.
Asperger’s is high-functioning autism, and ADHD is on the autism spectrum. And I know the “spectrum” runs in the family. So when I hear Shane talking or thinking in such a literal manner, I think, it MUST be Asperger’s.
And he’s a synaesthete – he experiences letters as colors. This is a trait that is much more prevalent in people with autism-spectrum disorders.
In other ways, it seems impossible for Shane to have any “disorder.” He’s functioning beautifully – except when he’s utterly baffled by something that is so obvious to other people.
Did I just not teach him well enough when he was younger?
I thought I’d nailed it with “Nonverbal Learning Disorder.” But there are symptoms of NVL that he doesn’t have – just enough to make me wonder.
Meanwhile, I’ve noticed that he’s got very serious challenges understanding subtext, or body language, or reading between the lines. For years, he identified people by the color of their hair – and didn’t realize they had different faces. More than anywhere else, this is going to hurt him socially.
So since no one believes me, and no one else (except his kindergarten teacher who helped to diagnose him with a vision processing disorder) seems to notice the issue, I am always on my own.
Then I got an email from Shane’s English teacher. Shane had gotten a C – which is a very low grade for Shane – on his quarterly assessment. When I asked why, this is what his English teacher had to say:
I went back and analyzed Shane’s test response and identified two areas of weakness:
1.) Apply knowledge of language to understand how language functions in different context, to make effective choices for meaning or style, and to comprehend more fully when reading.
2.) Cite strong and thorough textual evidence to support analysis of what the text says explicitly as well as inferences drawn from the text.
Simply put, Shane needs to first and foremost understand figurative language. From both his test and my classroom observations, Shane gets the overall picture of what the text is about, but can’t quite explain clearly how he came to the conclusion. … Inferencing is also an important skill to work on and he can accomplish this with the more he reads and THINKS about the reading.
Inferences, figurative language – this all relates back to Shane’s overwhelming ability to be literal. Whatever it is, he needs to work on it.
So I’m trying to “train” him through – of all things – YouTube. I’m finding videos related to each little piece of what might ail him.
But it’s incredibly frustrating. For the first time in my life, I find myself without any ideas on how to help my child. Maybe this is why I spent so much time concentrating on how to help Dylan – because ADHD is so well-studied and documented.
I ran into an old friend one day who said that she’d just found out that her son has Asperger’s – at the age of 32. Asperger’s wasn’t a “thing” when her son was younger, but now that he’s 32, he’s finally able to be diagnosed and properly treated.
I sure hope I don’t have to wait until Shane is 32 to figure out how to help.
I am not a huge fan of tradition, so Mother’s Day is not bright on my radar. It’s nice having a day, but we don’t spend the whole day buying purses or eating at some high-priced, lavender-infused bistro.
As a result, my sons can almost forget about it beforehand. They don’t fret over cards or gifts – although this year Shane spontaneously presented me with a hidden word puzzle book, which I love.
Mostly, I just enjoy spending time with the boys. We played several games of Racko this year, after playing Apples to Apples and Big Boggle. We watched “Ferb TV,” my favorite Phineas and Ferb episode, and I got to pick anything I wanted to eat for lunch and dinner. (Bill cooked, thank goodness.)
For health reasons, I am on a very restricted diet. NO gluten, dairy, soy, rice, potatoes, corn or sugar. My blood sugar skyrocketed, probably because I consumed a ton of fruit.
So I am now fighting extra hard to avoid even trace amounts of sugar. For lunch, I asked for hot dogs and baked beans, a treasured staple from my childhood.
We had one, soup-sized can of baked beans in the cupboard: 16 grams of sugar in 1/2 cup. The entire can was 42 grams of sugar. Previously, I would have eaten it anyway. But my health is in danger, so even on Mother’s Day, I knew better.
Since it was my special day, Dylan and Shane went to the grocery store to find me some sugar-free or reduced-sugar baked beans.
They were gone mere minutes when Shane sent the first photo: Dylan crouched in front of a wall of baked beans, scouring labels. Then the texting began.
No sugar free beans sorry
This is the only can that doesn’t say “made with brown sugar” or “made with extra brown sugar” on it
We can’t find reduced sugar either
I’m looking at all the beans they have mom
They all have sugar
I called Dylan to tell him to forget it. He answered without saying hello: “After reading the labels absolutely every can of baked beans, I am now certain that there are no baked beans without sugar.”
“Don’t worry about … ” I started to say.
“Oh wait! This one has 10 grams of sugar. Ten is the lowest I can find.”
That’s more than 30 grams per can. “Forget it, Dylan, really. I just won’t have baked beans.”
“It’s Mother’s Day,” Dylan said. “Let me get one can. You can have ten grams of sugar on Mother’s Day.”
I was about to agree – or maybe I wasn’t – when Dylan found a can with only seven grams of sugar per serving. “It’s pork and beans, though,” he said. “It doesn’t say ‘baked beans.'”
“That would be great; thank you,” I said, then hung up the phone, ecstatic that I’d limited my sugar intake to something almost reasonable.
I’d told the kids they could get some ice cream while they were at the store, even though it is 99% made from ingredients I can’t eat. Before they checked out, Shane sent me a photo of the ice cream they’d selected. Three half-gallons of Breyer’s and Turkey Hill, and two additional pints of Ben & Jerry’s. It seemed a bit much, so I texted back.
Is anything on sale?
I don’t think so.
Put the Ben & Jerry’s back if it’s not on sale.
Somehow, my struggle with sugar hasn’t affected them in the slightest.
Still, it was a glorious gift, having my well-educated children reading labels, scouring details, and successfully finding me a can of beans. My Mother’s Day could not have been any better.
When I was pregnant with Dylan, things didn’t always go well.
First, very early in my pregnancy, I passed a blood clot – a horrible glob of something fell into the toilet. Bill and I cried for two hours, thinking I’d miscarried, until we finally saw the doctor.
I got an ultrasound. “I don’t know what you passed,” said the doctor, staring at the black and white screen. “But your baby is just fine.”
Then we really cried. The baby was fine!
A few months later, after we’d finally decided on Dylan’s name, the doctor saw something on baby Dylan’s brain – “a spot” – whatever that meant.
“It’s a marker for Down’s Syndrome,” the doctor told me. “It doesn’t guarantee that your baby has it, but it is a marker. Because of your advanced age (35), I would recommend getting an amniocentesis, just so you can be prepared.”
During the amnio, baby Dylan seemed to be reaching for the needle – even then always active, wanting to touch whatever was nearby.
We had to wait several days for the results. Those were hard, hard days.
Finally, we got the results. “We can’t guarantee that your baby is fine,” they said, “but the amnio showed no signs of Down’s, spina bifida or cystic fibrosis.”
Again, we cried. This time, they were tears of relief.
My water broke a full 24 hours before Dylan was born. He was eight days late, but never fully dropped. Someone guessed that his foot might be stuck in the umbilical cord.
My “all natural” childbirth became the “try anything” approach. Eventually, an emergency C-section gave us our a surprisingly perfect baby boy.
I had no idea that Dylan wasn’t “typical.” I didn’t know that zipping around like a Tasmanian Devil was unusual for a toddler. I thought all babies did that.
And I didn’t know that by the age of 2, most kids could say “white” and “yellow” instead of “ye” and “yo.”
I also didn’t know that most toddlers can’t spell their own names or count past a hundred. And I didn’t know that empathy was reserved for ages 8 and up; Dylan had true empathy before he ever got into preschool – at two.
During preschool, I blamed Dylan’s little friend, Nicholas, when Dylan got into trouble. By kindergarten, I knew I’d blamed the wrong child.
By first grade, Dylan was so bored, he could have slept through school and still been passed along to the next grade. Truthfully, he could have started school in 3rd grade.
The gifted program was Dylan’s first truly wonderful school year. For the first time, he was interested in learning.
There were some suspicions that Dylan had ADHD – but no one ever really “diagnoses” ADHD. Instead, everyone weighs in – teachers, parents, friends. Then the doctor writes a note to the school to “help” with “problem areas.”
Dylan carries that rather haphazard diagnosis with him to this day. In a way, it was helpful. But being gifted – and bored – caused him far more difficulty than ADHD ever could.
And now, finally, Dylan is graduating. He survived everything, and is leaving school with a real sense of himself and who he is – which is way more than I can say for myself at that age.
I wonder sometimes, still, about that spot on his brain – that “marker.” Did it make him gifted? Is it also a marker for autism-spectrum disorders? Maybe that spot is a “marker” for something that no one will discover for a hundred years.
However it happened, I am just proud of the man Dylan has become.
