My 9-year-old son was arrested, hospitalized for three months, and misdiagnosed twice.
My son was arrested on a Thursday night when he was nine-years-old.
By arrested, I mean Las Vegas Metro police officers came inside my house, with holstered guns and handcuffs, escorted him into the back of a police car, and took him away.
He was in juvenile detention for a weekend.
He was so small that they didn’t have clothes that would fit him. I was told that he did not sleep or stop screaming for me for seventy-two hours. He was isolated, because he was so young.
But also because he had to be restrained in a chair.
I called a lawyer and spent the weekend doing what I had to do to get my son admitted into a psychiatric hospital. I cried a lot.
Things are kind of blurry in my memory. I remember having a panic attack and being very sure I was dying. And I remember laying awake, staring at the ceiling, imagining my son in a room full of teenagers who had done whatever they’d done to get arrested.
Small and scared and strange, with a strong tendency to rub people the wrong way.
I was honestly afraid he’d be shanked.
And I remember thinking things would have been so much different if my kid wasn’t blonde and blue-eyed and living in a middle-class mostly-white neighborhood.
If he’d been a person of color. If we’d lived in a different neighborhood. If he’d been older or more violent or . . . things could have been so much worse.
I knew almost from his birth that Nicholas was a high-needs kid. Different. And, God I love him so much, but difficult. He was born to do things the hard way.
He didn’t sleep. Not as a baby, not as a toddler, still not now, as an adult. He’s never needed more than two or three hours of sleep a night, punctuated by occasional sleep binges, where he’ll sleep nearly around the clock, and occasional all-nighters.
Imagine being a single mom to a three-year-old who legitimately needs half as much sleep as you do. Maybe less. A cleaver three-year-old who does stuff outside his bedroom window in the backyard so he can climb out at two in the morning to play in the sprinklers.
I couldn’t work, because Nick couldn’t go to daydare. I tried. He managed to uproot a tree at one day care center. He routinely just walked away when he wanted to go home — triggering panic.
He wasn’t violent or mean or a bully — but when he was that young he was compelled to touch people. He has spatial issues. A therapist said it was how he knew where he was in space.
I quit so many jobs after getting so, so many calls that amounted to I’m sorry, but we just aren’t a good fit for Nicholas. For the love of God, come pick him up.
Nick’s a baby in this picture. He’d just turned four years old. Before kindergarten. Before all the meds. Before being arrested. Before the hospital. Before everything.
When Nick was five, I knew what was coming.
Kindergarten was going to be a special kind of nightmare. I was sure there was no way — at all — that my son could sit even kind of quietly and learn in a classroom full of every single sensory stimulus possible — from toys to so many other kids to fluorescent lights to having to keep his shoes on all day.
I was right.
The school psychologist recommended that I take my son to his pediatrician. The diagnosis du jour in 1998 was ADHD. I resisted as long as I could, but I was very young and I knew something was going on with my son.
I needed to trust that someone could help us.
I took him to his pediatrician around Christmas that year. That doctor started Nick on medication for ADHD. Stimulants.
Here’s how that should work.
When you take medication it should, you know, work. If it doesn’t work, either you’re being treated for the wrong thing or your thing is resistant.
I’m not a doctor. But I’m still pretty sure that’s how medication should work.
That is not how it worked for Nick.
I’ve been part of the special-needs-parenting space for a long, long time. I’ve known lots of kids for whom AHDH medication — Adderal, Ritalin, etc. — was a miracle. So, I won’t dismiss every diagnosis or suggest that no kid needs medication or medical treatment.
But for my particular child? It was disasterous.
He took medication for ADHD from the time he was six until that Thursday, three years later, when he was arrested. Because the medication never worked, it was constantly changed and increased.
By the time he was arrested, he was seeing a neurologist who spent that summer increasing his dose of a powerful stimulant and adding in anti-psychotics to combat side effects like night terrors and hallucinations. Also, the super fun one where he would literally growl at anyone who looked at him.
The day he was arrested, a neighbor called the police when he found Nicholas standing on his front lawn with a (closed) Swiss Army Knife clutched in his fist, ranting about killing him if he came near our house.
Nick was in the third grade. He weighed 60 pounds. The knife was one of those tiny red folding pocket knives designed for a keychain with a blunt, 2-inch long blade and even if it had been open, he didn’t pose an actual threat (in that moment, anyway) to our adult male neighbor.
But, he called the police.
The officers were kind. At least that’s my memory. They kept their guns in their holsters. They called me Ma’am and talked to me slowly and quietly.
It was very, very clear that Nicholas was having some kind of break. He could not calm down. If I could do this night again, I would insist that they call an ambulance. He should have been taken to the hospital then.
The Psych Ward
My only focus for seventy-two hours was getting Nick out of juvenile detention. The lawyer was upset that the police didn’t take him to the hospital instead of arresting him, and he sent me there myself to get him admitted before a Monday morning meeting with the judge.
That weekend is a total blur. I remember the hospital staff being kind and helpful — they walked me through all of the paperwork and made me feel comfortable that my son would be okay there.
A few months before, a friend had suggested that I apply for social security for Nick. That came through the week before he was arrested. This was long before Obamacare and thanks to SSI, Nick was the only person in our family with health insurance. Small blessings. (Okay, big blessings.)
Nick was released from juvenile detention into my custody, with the agreement that he would be admitted immediately into the hospital.
Another, scarier diagnosis.
Nick was diagnosed with bipolar disorder almost as soon as he was seen by a doctor.
I know some things now that I didn’t then.
Like this: you should insist that your kid be taken completely off the meds that are making him hallucinate before he’s given a new diagnosis.
And this: doctors are sometimes very, very wrong.
Nicholas was taken off his ADHD meds and immediately put on a pretty terrifying array of psychotropic drugs to treat bipolar disorder.
He was in the hospital for three full months — because the meds didn’t work.
Here’s what did happen during that time. Once he was off the stimulant medication, he started to eat. Since he was six, he’d been very small for his age. He wasn’t just a picky eater. He hated food. All food. Getting to eat had always been a struggle.
Not anymore. And once he started to eat, he started to grow.
No joke. I had to bring him new clothes every two weeks. He grew six full inches, his weight nearly tripled. He gained three shoe sizes.
Also, he was lethargic. I went to visit him every day during lunch, and he routinely fell asleep with his face in his food. He drooled. He went from a little speed demon on hyperdrive to slow and lumbering.
At one point, about six weeks after he was admitted, they sent him home. I woke up the first morning and he’d gotten up in the middle of the night and eaten two full boxes of corn dogs. Something like 36 corn dogs.
He was readmitted a few day later and spent another six weeks hospitalized.
When he finally came home he was unrecognizable. I spent the next three years trying to cope with the fact that my son was bipolar.
Then the Easter morning when he was thirteen, he couldn’t lift his head.
It was terrifying. His head just lolled back. He couldn’t hold it up right.
I was afraid he was having a stroke. He wasn’t. It turned out he was overmedicated.
At this point he had a psychiatrist who was basically maintaining the medication he’d left the hospital with. It’s hard to wrap my head around how I feel about that.
When someone is overmedicated for bipolar disease, she told me, the remedy is to slowly reduce the dosage until cycling starts, then up it a little until it stops.
Nick never started to cycle. Within about six weeks he was completely off medication for the first time since kindergarten. And his doctor said that she didn’t believe he had ADHD or Bipolar Disorder.
This is where I get angry, when I think about this story.
Nick saw a dozen doctors between the ages of six and thirteen. Any of them could have taken him off medication all together, so that they could evaluate him. None of them, not one, did.
A few of them shut me down when I tried to bring it up.
It took his last psychiatrist minutes, after meeting with him completely med-free, to see that both of his previous diagnoses were wrong.
Nick doesn’t have ADHD. He also doesn’t have Bipolar Disorder. He’s twenty-five now and has never had a mood cycle.
His psychiatrist said she thought he might be autistic. Autism had never come up before. In the 1990s, when Nick as six, autism was strongly tied to speech delay.
In fact, in order to get school services for autism, at that time in our district, a speech delay was required. Nick had a speech issue — but it was the opposite of a delay. He was a precocious speaker.
He started talking at a ridiculously young age — and I promise you, where ever he is as you read this, he’s talking. He fills up every moment of silence with speech. I remember hearing him talking himself to sleep when he was an infant. He still does that now.
Nicholas’s differences are not visually obvious. It’s not clear until he starts to talk to you, and then you know. Maybe not what, but something. That complete lack of visual disability was a big part of why school sucked so hard for Nick. His teachers and school administrators saw a ‘normal’ kid and expected ‘normal’ behavior.
So, no one ever even brought up autism until Nick was thirteen and the understanding of what autism is had shifted some. The requirement for a speech delay, for instance, had been removed by the school district.
His doctor referred us to another doctor for evaluation. Within a few weeks, Nick had an autism diagnosis. That shifted things at school and he became eligible for all kinds of services, including a one-on-one aide, the ability to use a calculator for math, someone to take notes for him, and permission to remove himself from a classroom if he was feeling overwhelmed.
For the record — one way to soften the blow of an autism diagnoses and actually make it something you want to embrace is to have it replace a Bipolar Disorder misdiagnosis.
I had my kid back.
And just like that, the bright, difficult, funny boy who couldn’t manage kindergarten was back. Eighth grade wasn’t any easier. That year, I learned about unschooling, though, and that changed everything.
Things got better.
He’s twenty-five now. He’s still Nick. It still seems like he was born to do things the hard way. He struggles with social cues and regularly pisses people off without even noticing. He still doesn’t sleep much. I’m sure he never will.
Last winter, he saved enough money to go visit his boyfriend in England for a month. He travelled alone. He’s had a job since he was nineteen — and the same job with the same company for the last three years. He does best with jobs where he knows exactly what’s required of him every single day. And that’s okay.
When we moved to Pennsylvania, his job transferred him.
He lived on his own in Reno and he’ll be out on his own again here in PA pretty soon. He manages his own money. He’s been in a long-distance relationship with that young man from England for seven years. He makes friends easier than anyone I’ve ever met.
Things get better. Even difficult kids grow up and mature. That’s what I want you to know, if you’ve got a kid like Nick. When your difficult kid is melting down. When you start to worry about what their life is going to be like.
That, and I want you to be aware that even professionals can be wrong.
They aren’t always. I still trust doctors. But I ask more questions now. I would not ever blindly allow a child to be medicated without asking questions. If I could go back, I would insist on Nick being off his meds completely before being re-diagnosed in the hospital.
I wish I’d found unschooling sooner. If I wasn’t so sure that I had to find a way to make it so that Nick could go to school all day, I might not have been so ready to accept a diagnosis that didn’t fit. Twice.