In addition to Dylan’s multitude of challenges, he also has many gifts – one of which is a spectacular singing voice. And he’s got a great memory for lines and lyrics.
As a result, Dylan has the male lead in the middle school musical, Once Upon a Mattress. It is the story of “The Princess and The Pea,” in musical form. Dylan plays Prince Dauntless, a flop-of-a-fellow whose overbearing mother, the queen, makes his arranged marriage all but impossible.
At the dress rehearsal, Shane and I went to the school to film the show.
The stage crew was testing microphones. “Dylan,” a voice called, “just talk normally until we get your level.”
Dylan said, “Hi, um… I’m Prince Dauntless.” He was in full dress, gold crown shimmering in the spotlight.
I was in the audience, tears already glistening in my eyes at my beloved child’s voice.
“I have an overprotective mother,” Dylan said.
My jaw dropped. Why is he talking about me? I wondered.
“Well, to say that she’s overprotective would be an understatement,” he said.
Why is he suddenly blurting out all this personal stuff? I shrieked in my head. Is it just because he can get away with it?
He continued, “As a matter of fact, I hope she’s not listening because then I’ll probably get a five-minute lecture from her. Because my mother talks all the time. She never, ever stops talking.”
My jaw was on the floor.
The voice called again, “Okay, Dylan, thanks.”
Dylan hopped off the stage and started to run out.
“Thanks a lot, Dylan!” I yelled after him, hoping to invoke laughter from the other parents. But no one even breathed in my direction.
It wasn’t until midway through the rehearsal that I realized what had happened. I watched the queen on stage, ranting and raving as Dylan stood idly beside her. The realization knocked the breath out of me.
Dylan wasn’t talking about me, I thought. Prince Dauntless was talking about his mother, the queen.
On our way home, I asked Shane about the mic-check experience: “Did you know Dylan was talking about the queen?”
“Yeah,” said Shane.
“At first, I thought he was talking about me,” I said, guffawing at the error of my ways.
Shane didn’t laugh.
Finally he said, “But it could have been about you. I mean, you do talk a lot and you probably would give Dylan a long lecture if he said that stuff.”
Shane paused, to see how I would react to his minor attack on my character.
“Yes, it could have been about me,” I said, still laughing. “It definitely could have been about me.”
Which is not really funny. Not funny at all.
Dylan and I were riding in the car, discussing his friend who had invited him to a birthday party.
“I guess he’s talking to me again,” Dylan said when he got the invitation.
“So,” I asked him on our way to buy a birthday present, “do you think his friendship has anything to do with your being off medication?”
“I dunno,” he said. “Just one day he told me he wasn’t going to talk to me anymore. He said I was annoying and he didn’t talk to me for like three months.”
This happens frequently in Dylan’s world. Then, for whatever reason, the friends come back.
I can’t tell if this is typical of middle school, or if Dylan is just completely unaware of the people around him.
I remember when Dylan first went on medication in fourth grade. He was playing basketball with the guys at recess every day. A few days after he started taking pills he said, “I noticed that people throw me the ball more now.”
I still can’t determine if this was a result of Dylan being aware that he was getting the ball more often, or if he was just more aware of the game itself. Or if the guys had noticed that Dylan was more on task, and they actually trusted him more.
Now, in seventh grade and completely off med’s again, I asked him flat-out: “Do you feel any different now that you’re not taking anything?”
“I feel more brain-dead,” he said.
That was a shock. I expected him to say he felt more alive, more like himself, more the person he wanted to be. For all those months, Dylan said he didn’t want to take a pill. He said things like, “You don’t want me to be who I am. You just want me to take a pill.” He spat the word “pill” at me.
But now he says he feels brain-dead.
“We’re going to the neurologist soon,” I told him. “Do you want to try another stimulant?”
“I guess,” he said.
“If you really want to try another stimulant, we can,” I told him. “I just need to know what you want me to fight for.”
“I said ‘I guess,'” he repeated, probably not wanting to admit – any more than I do – that it’s our best option.
So I am going back to researching – to the book I adore, Straight Talk About Psychiatric Medications for Kids, and the saved email messages from the GT/LD group that I got back in October, recommending a variety of medications.
We are starting over, again, to see if there is some miracle pill that will allow my child to focus on things that don’t interest him – so as to someday graduate from college and do a job that does interest him.
I don’t feel delighted by this option. I don’t feel hopeful. I don’t feel like it’s a good – or a bad – choice.
I am simply taking the next step – again. And while I probably should be praying, I am instead holding my breath to see what will happen.
Dylan is scheduled to go back to the neurologist next week.
We’ve been going to the neurologist for years to get medication. Now, there is no medication. So why are we going back?
Are we planning to try a new medication? Should we just sit and tell her what’s going on, then explain that we’re just going to let him fail in school so that he doesn’t kill himself before he turns 18? Or should we see if any new ADHD medications have been invented in the past few months?
Should we try a different stimulant, a lower dosage, a higher dosage, a different non-stimulant? Or should we find a new doctor? Should we go to one of the fly-by-nights we interviewed years ago, who wrote us a prescription without even examining our 10-year-old?
Or should we put Dylan on a constant regimine of coffee and other caffeinated beverages, since that’s how his dad stays focused? And what if that works? Are we willing to risk the heart problems, high blood pressure, anxiety, irritability and digestive disorders that come with it? (Apparently, my husband thinks it is worth the risk to his body – but would he think it is worth the risk to his son?)
I keep thinking we should try a different stimulant – something without such a huge crash. But then I remember Dylan, wailing and moaning and face-planting himself on the floor in despair.
And I think, no. No stimulants.
I don’t even know why we’re going in, except that we love our neurologist and we really need help. I just can’t even fathom what she’ll be able to do for us. I should go in with a plan, a thought, a hope. But I have none.
I don’t want to see him fail. But more importantly, I want to see him happy.
So now what?
We checked Dylan’s grades at the mid-way point of the final quarter of 7th grade. He has 100% in Engineering and Chorus – and 98% in P.E. We are so proud. All of that without medication!
Unfortunately, he has 3 D’s – in algebra, social studies and science – and Dylan is failing English. He’s also accomplished all of that without medication.
Most of these grades can be remedied by Dylan simply turning in his work. He completes some of it, but he rarely turns in anything. He claims that he doesn’t know which things need to be turned in, and which things don’t need to be turned in.
For algebra specifically, he is missing eight assignments. He has had math homework four days a week since the second grade. And yet, he claims that he didn’t know that there was homework for those eight days.
When Dylan gets home from school, he goes straight to the couch, plays on his iPad, listens to his iPod, and texts his friends all afternoon. This happens every day, without fail.
“Are you sure you don’t have homework?” I ask him.
“I don’t think I have any homework,” he says.
“Did you ask your teachers after class, just to be sure?” (This is a strategy we developed last month, so that Dylan would know for sure if he has homework. He’s supposed to ask his four core teachers every day if he has any homework or missing assignments.)
“Oh, I forgot to do that today,” he says, “because (insert lame excuse here).”
For about a week, I was able to check up on him. Then I forgot, or we got busy, or something happened, and now he just forgets regularly. He doesn’t use his agenda book. He doesn’t use the voice recorder we got him. He doesn’t write down anything.
Our next trick is a pen that records classes on the end of the pen. The special ed coordinator is going to learn how to use them, and Dylan will get one for school next year. It sounds like a miracle.
It also sounds like a long time away. And it sounds like another cool gadget that will keep Dylan interested for a few weeks, until he comes up with another excuse as to why he can’t use it to record what needs to be done for homework – or why he “forgot” to turn it on during class.
We took away Dylan’s video game privileges last week, when we learned that he was missing some assignments. He still hasn’t bothered to turn in those assignments – and now there are a dozen more.
So we took away his phone, too.
Now he’s furious with us for the consequences of his actions – and I spent the morning at school, talking to the algebra teacher (who is no longer allowing homework to be turned in late – but will make an exception this once) and talking to the special ed coordinator (who will hopefully be getting that pen for him).
There are no other options. With medication out, and every natural cure already tried and failed, I am lost.
We’ve recently learned that the caramel color found in most maple syrup is a carcinogen. So we’ve moved on to natural maple syrup.
With its natural sugars, it’s more like a fruit than a candy. Shane doesn’t love the syrup, but he eats it. Dylan, however, says the new syrup tastes like vomit and he’d rather have nothing on his pancakes.
“Fine with me,” I said.
“Isn’t there anything except this syrup that I can put on my pancakes?” he moaned.
“No,” I said. Then I went to the grocery store and discovered a natural strawberry syrup. Dylan loves strawberries, so I bought it.
“Ew!” he wailed. “It’s terrible!”
So we went back to nothing on his pancakes. And this morning, we were having leftover chocolate chip pancakes for breakfast. I made a pile of three pancakes and sliced a banana on each one for added sweetness. It looked like a TV commercial for IHOP.
Dylan came downstairs for breakfast.
“I don’t want bananas on my pancakes,” he said.
“Dylan,” I said, “I worked very hard to make a nice breakfast for you. The only thing you can say right now is ‘thanks, Mom!’ Everything else is inappropriate.”
“But I just really didn’t want …”
“I don’t care if you didn’t want bananas. I was trying to do something nice for you and if you don’t like it, keep it to yourself.”
I left the room and came back a few minutes later.
Dylan was shoveling pancakes with bananas into his face. “This really isn’t bad,” he said with his mouth full, “except for the chocolate chips.”
“What?!” I said. “You’re complaining about the chocolate chips?”
“Well they’re all hard or something,” he said. “They’re just not right.”
I paused, only briefly, before continuing to argue with him about how to respond to the morning’s breakfast.
That pause was the moment that I realized: No matter what I say, no matter what I do, he’s going to be rude, and dislike anything I do for him. And nothing is going to be good enough.
But I can’t stop trying.
I truly wish I could stop trying. Life would be so much more pleasant if I just didn’t care about his well-being. But I can’t.
So next time, I’ll make sure the pancakes don’t have chocolate chips in them. I’ll add fruit, probably. Maybe I’ll add strawberries instead of bananas – a risky move, I know.
And I’ll hope against all rational thought, that he’ll sit down to eat and say, “Thanks, Mom. This is delicious!”
On Friday after school, immediately upon seeing me, Shane announced, “They announced the patrols today and I failed.”
The school patrols are the kids who help the little ones across the street. They are chosen after teachers score all of the fourth graders on their level of maturity and responsibility.
And Shane thinks he failed this little “test.”
To make matters substantially worse, of the 20 patrols chosen, seven of them are close friends of Shane’s.
And Shane only has eight friends.
It’s a status symbol, to be a patrol. They have patrol parties, patrol training, patrol lunches, and even a patrol camp. To do their daily jobs, patrols get to school early and stay late – which means that all of Shane’s friends – the ones he’s been running to see every morning for months – will be too busy working to talk to Shane.
Worst of all, Shane would make an excellent patrol. He is responsible, mature, polite, and professional. Shane follows the rules to the letter. He would have been a perfect fit for the patrol job.
But Shane was overlooked. Again.
Shane went through something similar last year, when his closest friends got into the GT program, or were (at least) waitlisted. Shane didn’t even get waitlisted. We weren’t heartbroken, because Shane really didn’t need the GT program, but it was a blow. Just like with the patrols, he watched as all of his friends wandered off into the sunset without him.
So this morning, Shane wrote a song. It’s sitting next to me here, in a notebook full of misspelled words by a 10-year-old boy who never says much about his feelings. I fixed the misspellings for inclusion here.
I walk to school every morning; same thing happens every day.
No one seems to notice me; no one even cares
Because I’m invisible, yeah; ’cause I’m invisible, yeah
Just plain invisible, yeah – and it’s getting pretty lonely.
I cried when he sang it for me. And now I just want to crawl into a hole – or jump up and down screaming for him to get some well-deserved positive attention.
But I don’t scream, and I don’t crawl into a hole. I just write, and I pray.
When we took Dylan off of medication, I declared that nothing had changed. He is still very bouncy and unfocused. He sings all the time. His ADHD symptoms haven’t changed – which means the non-stimulant medication really wasn’t helping him.
But his emotional behavior has changed.
We have had a lot of stresses in the past week or so. Vacationing and coming home is – in spite of its fun – stressful. Going back to school after a long break is stressful.
Then Dylan got three teeth pulled to make way for upcoming braces.
And that’s when I realized that Dylan had changed. He has come through this strong, like an adult. In spite of what is surely incredible pain, he has had no emotional meltdowns, no tantrums, no lashing out of any kind.
He is still a teenager, and he’s back to texting his friends instead of talking to family. But he has been friendly and fun and calm and kind. One morning, he actually apologized because he’d been grouchy and tired the night before.
Kinda like an adult. And kinda like Dylan.
It’s been like having the “old” Dylan back. He’s not free of emotions, and puberty is still rearing its ugly head, but Dylan is now rising to the occasion instead of folding. He’s not whining and moping – he’s pushing through. He still complains, but in a more mature fashion.
In the adult world, when a drug addict gets clean, the same kind of thing happens. Taking the drugs out of the system leaves the addict with himself and his emotions. And if he’s lucky, after drugs, he learns how to deal with those emotions without drugs.
Basically, he grows up.
And I’m seeing it in Dylan now. It’s like we took away the barrier to his ability to grow emotionally. By not giving him drugs to “help” him, we’ve given him a chance to help himself.
I have no idea how I could have not known this before. We were doing the absolute best thing for him, we thought, by giving him drugs to help him through school. He was struggling and suffering – and the drugs helped.
Until they didn’t help anymore.
Yes, he’s bouncy and unfocused. And he really does sing all the time. And he’s still a teenager, which is plenty irritating all by itself.
But he’s Dylan again, and he’s maturing and growing beautifully. And I wouldn’t have it any other way.
Disney World is my favorite place. Everyone is so happy, and the “cast members” trip over themselves making sure we have a nice time.
After eight days of glorious treatment from simple smiles to free desserts, we decided to pick up some sandwiches at the Orlando airport.
There were four kinds of bread: white, rye, multi-grain and ciabatta.
The deli worker looked my direction. I said, “I’ll have a bacon and cheese on ciabatta.” (It was for Shane.)
“We don’t have ciabatta,” she said.
I looked at the menu. Yep, I’d read it correctly. “You don’t?” I queried.
“We have Italian.”
I looked at the menu again. White, rye, multi-grain and ciabatta. “I’ll take Italian,” I said. “And I’d also like a tuna salad on multi-grain, please.”
“We don’t have multi-grain.”
Over her head, I reread the four choices. “So basically,” I said, “you don’t have any of the breads on your menu.”
The deli worker stared blankly. No explanation, no apology. No smile.
“I’ll have Italian,” I said.
We were not in Disney World anymore.
When I repeated the story to Bill a few minutes later, I said we were “back in reality.” My 10-year-old overheard this.
“But Disney World is real,” Shane said.
And he said it with such sweetness, and such conviction, that I am still thinking about it.
He’s right, of course. Disney World is real. It’s a place that can be sensed with all five senses. It’s a solid, huge place just begging to be explored. And in that sense, it is entirely real.
But Walt Disney’s major goal for his parks is that they be magical. With the help of properly trained staff and attention to even the most minute details, Disney World has become a place where people can escape reality – and still be in it.
So why isn’t the world more like Disney World – instead of the other way around?
I wasn’t alive in the 1950’s, but I imagine that people were happier then – less stressed, more friendly, more in touch with neighbors and community. The population of our country has increased by 160 million people since 1955, so there are bound to be more grouchy ones.
But why does everyone have to be so grouchy now? Looking around at the red lights, I see nothing but frowning faces and self-absorption. No one is pleasant.
Why do I have to be so grouchy? I am one of the least pleasant among the drivers on the road. I spend half my time just trying to pass whoever is in front of me. My kids have started talking to their friends about how I drive. That’s how bad it’s gotten.
But I can change that. I can change that one little thing. I can become a more pleasant driver. I can do things to make the world a little bit brighter. I try to teach that to my kids – when I’m not behind the wheel making an idiot of myself. And I can be a little nicer to folks around me, even if I’m hungry, tired or stressed out.
I surround myself with nice people. I have a great family. My husband is possibly the nicest man on the face of the earth – which drives me completely crazy – but I could take a few lessons from him. There’s a lot to be said for the Dale Carnegie books, written back when life was simpler and still pleasant – back when people were nice to each other just because they could be.
As always, the change begins with me.
Over spring break, we went to Disney World. Affording it is impossible, of course, so Bill worked through some of his “vacation.” And the crowds were unfathomable.
But with months of prior planning, we were able to pull it off and have a marvelous time. I spent hours on the computer, researching where and when to go, and how to traverse the parks for minimal waits. We had every minute of every day meticulously planned – although I was open to being flexible, which came in handy.
During one delightful Disney day, though, Dylan said, “Why can’t Shane and me just go and do what we want to do?”
I allowed the poor grammar. “That doesn’t sound like much of a family vacation,” I said.
“I’d be with my family,” he retorted. “Shane is my brother. But I wouldn’t have you pulling me where you want to go and making us go with you.”
I flashed back to several weeks earlier, when Shane so sweetly asked, “I know the answer is probably no, and that’s okay. But do you think that Dylan and me could kind of run around just by ourselves when we’re at Disney World?”
I’m not sure what they envisioned. I doubt it involved having the park filled to capacity with hot, sweaty bodies, noise in every conceivable direction, and sticky toddlers darting out at every turn.
But I told both kids – at separate times – that I would consider their requests. I talked to Bill and he said it would be okay, if we knew their general area and Dylan had his phone with him.
So on Wednesday, we did a little … experiment. The kids had been begging to play a game called Sorcerers of the Magic Kingdom, with Mickey Mouse cards and portals strategically placed throughout the park.
By noon, we were way ahead of our planned schedule. So I took a chance.
“All right, guys,” I said, “you have a little more than one hour. If you want to play your game, go. I’ll meet you at the Splash Mountain Fastpass entrance at 2:00. But don’t be late, or you won’t get this chance ever again!”
“But Shane lost the map,” Dylan said. So we went and got three more maps for the Sorcerers game.
Then, in the midst of approximately 80,000 people, I set them free.
I didn’t worry. I really didn’t worry. I crossed the park and went into Carousel of Progress and enjoyed my show. Exactly 21 minutes later I came out, checked the clock, and hopped on the nearby People Mover.
Just then, I got a text from Dylan: This game was a huge letdown. None of the spells did anything. So we just kept walking all over the place and ending up doing nothing.
Sorry… I wrote back. I will be back on that side of the park in 15 minutes.
Then the People Mover stalled, and I texted Dylan saying I would be late.
The crowds were so thick, I almost couldn’t cross the park. I was pushing my way past wheelchairs and strollers (which tend to break up crowds) and shoving my way through with “excuse me”s until I finally got to Splash Mountain, where the boys were waiting, a bit sad about their wasted hour.
Dylan said, “You’re late. I don’t know if I can ever trust you again if you are going to show up late!”
He made his point.
Then he let it drop, and we went on with our well-planned day, avoiding the crowds and heading back to our hotel before 4:00. To say we got the most out of our park time would be a gross understatement.
Plus, the kids had their “running around” time together – with, hopefully, a lesson learned about planning and crowds.
Well, actually, I doubt they learned anything at all. But I wouldn’t change a thing.
For a variety of reasons, we have taken Dylan off of medication completely.
We originally tried everything imaginable so that we wouldn’t have to use medication. We added and subtracted a hundred things to his diet, put him on morning exercise routines and gave him stress balls, bouncy pillows and texture strips to play with during class time.
Still, he couldn’t focus on anything the teacher said. He would just stare at the classroom fish. He took hours and hours and hours to complete just a tiny bit of homework. And he would go off to school sad, angry and lonely because he hated it so much.
Bill and I are not huge fans of medication, but I read somewhere that 80% of kids who have ADHD will medicate themselves if they don’t take ADHD medication. And that was the final straw. We put him on stimulants.
But if you’ve been following along… he can no longer take stimulants. So we had him on high blood pressure medication, which didn’t help anything. Then we moved to anti-depressants, which helped very little. Both medications were supposed to help focus (first) and secondarily help blood pressure or depression.
Neither medication did much for his focus, but a quick return to stimulants assured us that NO – he should NOT be on stimulants! But his teacher comments this quarter – they sounded exactly like the teacher comments in 4th grade – before he’d ever taken any pills.
So we’ve taken him off of everything.
And… here’s the best part: nothing has changed.
Dylan is still Dylan. He is brilliant but bouncy. He can be incredibly obnoxious. As I write, he is screaming, “Kick in the face!” and jumping around in the other room.
Oops, now he is spinning Shane around in the kitchen.
Okay, so nothing has changed since we took him off of stimulants. The new med’s have done so little, we are already used to Dylan this way.
There is nothing I would change about Dylan. He is who he is, and how he is, for a reason. But he is going to have a hard road ahead of him. Not everyone is ready for someone like Dylan. And while everyone mellows with age, I suppose, I doubt Dylan will ever be mellow.
He’s also going to remain unfocused, disorganized, fun, frustrating, anxious, beautiful, and simultaneously loud and completely spaced out to the point of silence. Heavy sigh.
We’re all in it for the long haul.
