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I Won’t Take Them

A Personal Account

The year was 2003. My son, Dustin, had just turned seven and was fresh out of first grade, that time of imagination, exploration, and gleeful discovery.

Except it wasn’t happening for my kid. While his peers played happily together, Dustin would sit far from the action, head down, uninspired, mentally adrift.

It broke the hearts of his mother and me.

In class, he was inattentive, anxious, never on task. Mind you, there aren’t all that many tasks to follow as a first-grader. But Dustin couldn’t even grasp recess.

What was wrong with our perfect, sweet, impossibly handsome little boy? Our friends all had their theories. Less TV. Fewer video games. More sleep. Better sleep. New diet. Extra family-bonding time—nothing seemed to help.

The school told us Dustin was falling dangerously behind his peers. What does that even mean? I wondered. How far behind can a kid get just a year post-kindergarten?

We were pushed into therapy—first a school counselor, who recommended a district psychologist, who referred us to a private psychiatrist. All assured us that, oh yeah, something is definitely wrong with your kid, we just don’t know what. Still, they were unanimous in touting a “medication option.” And at that midnight—Poof!—everyone in our sphere turned into a drug pusher.

It wasn’t just the mental health folk—it was our friends, friends of friends, fellow parents. Everyone had drunk the Kool-Aid and was telling us to get our own Kool-Aid, too. Who needs therapy when a little pill can remedy all the bad behavior, all the awful feelings? Abracadabra, problem gone. Perfect child. Perfect attitude. Perfectly easy.

Yet my wife and I resisted. We feared drugging our boy into oblivion. As a journalist, I’d learned about the effects of psychotropics, and was aware of big question marks around their efficacy. Common sense dictated it was unwise to mess with the brain chemistry of a developing child. So we kept doing more testing, more therapy, all the while being told that Dustin wasn’t normal, that he was out of step with his peers, socially challenged, possibly even autistic. What they couldn’t pin down was the one thing we most wanted to know—what exactly was wrong with the boy. A diagnosis.

Ritalin is a federally controlled substance because it can be abused or lead to dependence. The FDA warns of side effects which include: “new or worse aggressive behavior or hostility,” “new psychotic symptoms,” and “sudden death in patients who have heart problems or heart defects.”

After spending $3,700 for a battery of psychological testing, we got one—sort of. No, not ADD or ADHD. This was an entirely different set of letters we had never seen before: PDDNOS.

I know, it doesn’t exactly roll off the tongue. What it stands for is more cumbersome still: Pervasive Developmental Disorder Not Otherwise Specified. Or a fancy and clinically correct way of saying, “There is something wrong and we don’t know what, but we’re going to go out on a limb and say it isn’t ADD or ADHD.”

What Dustin had, really (like, in life) was anxiety, social problems, inattention and insomnia. He had few friends. He never wanted to go anywhere or do anything, was generally listless and couldn’t sleep. PDDNOS? Okay. It’s a name. It’s better than nothing. Barely.

More visits with psychiatrists followed. The input from parents continued to fly. We were ultimately made to feel that we were irresponsible parents if we didn’t put him on some sort of medication. The other moms and dads assured us that if we really cared about our son, there simply was no other choice. Call it pill-popping, peer-pressuring parental persuasion.

So we gave in when the latest in a series of shrinks prescribed Klonopin for Dustin’s PDDNOS symptoms. We were told the drug would help to “regulate” our son. He would start to sleep better. His anxiety would disappear. He would feel more relaxed and engaged in the world.

After picking up the prescription and reading the patient information, I was more ambivalent than ever. It said Klonopin, the brand name for the drug clonazepam, is used to treat epilepsy and panic disorder—both among the few things I was pretty sure Dustin didn’t have. But the doctor knows best, right?

More than 10,000 American toddlers as young as 2 years old are being drugged for ADHD with powerful speed-like drugs.

Then there were the possible complications: “Common side effects include dizziness, weakness, unsteadiness, depression, sleep disturbances, loss of orientation, and headache.” Wait. What? So it’s supposed to fix depression and insomnia but it’s “common” to inflict them as a side effect? Next, the “less common” side effects: “Confusion, hallucinations, unusual risk-taking behavior, weak or shallow breathing, involuntary eye movements, painful or difficult urination, seizures, muscle weakness, dry mouth, nausea, diarrhea, constipation, blurred vision, loss of coordination, skin rash, weight changes, irritability, hostility, hyperactivity, thoughts of suicide. …”

Suicidal Ideation, as it’s known in the psychiatric community. Lovely.

The potential harmful effects of Klonopin filled 16 pages. The possible benefits were spelled out in a single paragraph. Still, after a lengthy discussion with my wife, we went entirely against our gut and decided to start him on the medication, ultimately figuring doctors must know best and wouldn’t give us something that would harm our kid. Would they?

Dustin wanted none of it. “I don’t need pills to make my brain better! LEAVE ME ALONE!” he screamed when presented with the first pill. “I won’t take it. I WON’T!”

I tried to reassure him. “But it’s for your own good, to help you think more clearly and feel less nervous.”

“I feel good. Get away! Get it away from me!” He flung the glass of water off the table and against the wall, shattering it.

The battle raged for several days. Finally, we wore him down, bribing him with chocolate cake. And so Dustin took the meds. At first, there was no noticeable change in his behavior. Then on day three he had an awful, angry outburst—something we’d never seen before from our son. Upset at having to go to bed before a certain TV show, he started screaming obscenities and throwing books—at us—and then he fled, locking himself in the bathroom. All that night, he could not sleep. At 6:30 the next morning, when he should have been getting up for school, he finally fell asleep—and stayed asleep, all day. When he woke up at dinnertime, the agitated behavior returned.

For the next five days, Dustin’s sleep clock was backwards. He couldn’t go to school. He moved around hyperactively, nervously chomped on his shirt, and made a constant humming sound. He had no appetite.

We expressed concern to the doctor, who, rather than take Dustin off the medication, prescribed a second drug: Paxil. It’s generally prescribed for depression, and our son wasn’t actually particularly depressed, just agitated and strung out. But the psychiatrist insisted this would “even out” his reaction to the Klonopin and help him to sleep. “It’s common that children have some of these reactions when they first start a medication,” he assured us.

“Really?” I replied with incredulity. “I thought the meds were supposed to make him better, not worse.”

“They will,” the doc said. “Get him going on the Paxil and let me know how things are going in 10 days.”

The prescribing information that came with the Paxil was hardly comforting. This drug could cause an allergic reaction resulting in hives, difficulty breathing, or swelling of the face, lips, tongue and throat. Common side effects included headache, fatigue, drowsiness, restlessness, dry mouth, ringing in the ears, nausea and constipation. Less common were unusual bleeding, hyperactivity, slurred speech, rapid heart rate, depression (oh, the irony) and—you guessed it—thoughts of suicide.

This time, we didn’t ask Dustin to take the medication. We sneaked it into his food. And then we waited.

For a week, Dustin’s weird behavior and disturbed sleep continued unchanged. Then on day eight, it got worse. We went into his bedroom to find him smashing his head into the television set, blood dripping from a gash in his forehead. I ran and wrapped him in a bear hug as he struggled to get away, screaming, “Let me die! Let me die! I want to die!”

My wife was hysterical. We drove Dustin to the emergency room to have his facial cut looked at. It fortunately didn’t require stitches. But, clearly, this medication thing wasn’t working. We wanted to stop—immediately.

But these are powerful medications that you can’t just stop cold turkey. Dustin needed to be weaned off them, and that night we began the process of gradually lessening his dose to zero.

When we asked him why he struck his head into the television set, what Dustin told us was chilling: “I was trying to get my brain out of my head. My brain was telling me it didn’t want to be in my body anymore.”

You would think this would have been enough to convince just about anyone that the drugs were exacerbating, rather than solving, the problem. But Dustin’s psychiatrist assured us we just “hadn’t found the right medication combination yet” and urged us to try just one more medication: Ritalin.

Ritalin I knew. It was basically speed. Speed that supposedly had a calming effect on people whose internal wiring had them running too fast.

My wife and I discussed it and decided “just one more.” After a few days of coaxing, Dustin was on board. We gave him his Ritalin pill the next morning with his orange juice.

Just a few hours later, we got a phone call from Dustin’s second-grade teacher. “Your son is just so hyper-focused on task and paying attention that it’s fantastic!” she gushed. We were pleased, but apprehensive. Wasn’t it unusual that his first dose would be this effective? It seemed too much, and too soon.

My wife picked him up from school and gave me a wide-eyed look as they walked in the door.

“So, I heard school was…” Before the words were even out of my mouth, Dustin had raced past me, chattering away.

“Hi Dad… Wow I’m hungry… Can I watch TV?… What’s going on?… Can I go over to Theo’s house?… Wait, can I have a snack? I’m SO hungry… I want to go outside and run… I want to do everything! Come on!… Can I play on the computer?”

As this burst of words and thoughts were pouring from his mouth, my son was alternately climbing on the couch, running in and out of the bathroom, racing in and out of his bedroom, tossing a ball into the air, and jumping in place. Just jumping. This was a kid who was generally listless, quiet and low-key, suddenly transformed into a bouncing, screeching nervous wreck unable to stand still.

My wife approached cautiously. She said quietly, “The teacher said he kept borrowing food from the other kids and ate like three lunches. He did all of his assigned work in five minutes and then went to run laps around the schoolyard. He couldn’t sit still.”

“Oh God,” I replied, “what have we done to our son?”

At that moment, Dustin was at the refrigerator, grabbing at a loaf of bread and ravenously stuffing slices into his mouth, one after another. When I tried to take it from him, he yanked it back, screaming, “No! No! No! Have to eat, more food!”

Around midnight, our son finally settled down. At 3 a.m. he fell into a fitful sleep. Dustin didn’t go to school the next day. He also didn’t take any more Ritalin. I flushed the contents of the bottle down the toilet that night.

Dustin is now 18. For all 11 years since that day, he has been drug-free. Here and there along the way, the “medication option” has been hawked to Dustin by “concerned” adults in his sphere, and his constant and steadfast reply has been NO WAY. “I know I have issues,” he tells us, “but whatever they are, at least I can deal with them naturally without having to fight through any sort of poison.”

Dustin continues to have “issues,” mostly with social anxiety. But my son graduated on time with his high school class this past June. And this summer has been an absolute revelation. His apprehension, his isolation, his obsessiveness and rigidity—all have literally begun to disappear. Things impossible just six months ago, like navigating the city alone, he now does with assurance and ease.

All who know Dustin, and of his struggles, are convinced he is well on the road to being a normal, sweet-natured, independent adult. Whatever so-called “spectrum disorder” that was evident in his past is, by all indications, not in his future.

What Dustin told us was chilling: “I was trying to get my brain out of my head. My brain was telling me it didn’t want to be in my body anymore.”

We all shudder to think how different things might be had Dustin not loudly shouted the position of his own internal compass, giving free rein to those who would have scrambled his neurons with mind-numbing psychotropics.

His mom and I have little doubt he would be compromised, possibly robotic, his personality likely forever altered, his body doomed to a lifetime of pharmacologic addiction. He still thanks me for allowing him to deal with his condition his way, without navigating life through a medicated haze.

My son’s experience left me believing that the psychiatric community is interrupting the normal process of being a kid by turning so many into chemically-induced zombies, or worse.

That my family dodged a bullet is incredibly fortunate, and due largely to the fact that our kid—“issues” and all—was smarter than we were.

Here we thought we had to school our son in how to make his way in the world when in fact he has been teaching us all along.