Insurance covers almost nothing in the mental health world.
Our insurance, in particular, will only pay a premium (meaning, the actual fee) if a doctor is “in network.” But the doctors that are “in network” are usually booked for months in advance, since so very few therapists take insurance.
“In network,” only three therapists in our area specialize in the treatment of OCD. And only one of those three returned my calls – so he was our first choice. (And he’s in another county.)
Our in-network therapist sometimes seems like he’s reading instructions to us from a book. Shane’s doing fine, and therapy is helping, but I often wonder if Shane isn’t the therapist’s first-ever OCD patient.
So when he recommended that we try medication for Shane, we decided to give up on insurance and just find Shane some help.
I scoured the internet and made a list, mostly from Psychology Today online. And then I started calling psychiatrists, emailing psychiatrists, filling out online forms, and the like.
One group of psychiatrists told me that there was a three-month wait just to get an initial appointment. Another told me that I had to fill out a half dozen lengthy forms (which I did) before I could make an appointment.
Then I waited.
Some psychiatrists never even called back. Others called back only to tell me that they weren’t accepting new patients. And one called me to say that she had two available time slots – right in the middle of the school day – and that there was a two-month wait to get an appointment in the afternoon.
But I did get a call back from a psychiatrist who did things the old-fashioned way. He used his phone, and talked to me like a person. He seemed genuinely concerned that Shane get the help he needs, and he was able to see him right away.
“My wife specializes in OCD,” he told me. “She could do the assessment.”
I looked up the wife online, and sure enough – she only saw patients with OCD. She’d been seeing them for decades! We made an appointment for the very next day.
Yay! I thought. Finally! We can get a specialist and a prescription!
We paid $350 to sit across from an ancient woman who couldn’t really hear anything Shane said. The room – in the back of her house – was covered in antiques and military wall hangings that hadn’t been dusted since the dawn of time.
Fortunately, I witnessed the entire meeting, and knew that she wasn’t going to be a good fit for Shane. But I still needed that medication.
The OCD “specialist” finished his sentences, assuming he was saying things he wasn’t even saying. She guessed, based on what other OCD patients told her, and ended up “hearing” things that simply weren’t true. And then she told me he had “excessive” OCD and that he should be on medication as soon as possible.
“Okay,” I said, succumbing to her worldly wisdom. “Can you write us a prescription for something we can try?”
“Well my husband is the one who writes the prescriptions,” she said. “You’ll have to make an appointment with him next.”
“But we called him first,” I said. “Do we have to pay him, too?”
“Oh yes,” she said. “You will see me for the therapy and him for the medication.”
At $350 a pop, this was out of the question. So we just flushed that first $350 down the toilet, and started looking for someone quick and easy – and hopefully “in network” to write a prescription.
The search has not been easy.
The night before the first day of school has always been hard for me. As a child, I was often “the new kid,” and wandered through the halls on the first day completely alone, feeling like I was wearing a neon sign that said, PLEASE IGNORE ME. I DON’T BELONG HERE.
As a result, of course, I rarely spoke and was subsequently ignored.
And I never slept well on the night before school. I worried that I would be late. I worried that no one would like me. I worried that I would forget something essential, like a pencil. I worried that I would forget how to walk to school or, sometimes, where to catch the bus.
What amazes me is that, at the ripe old age of 55, I still dread the first day – even when I am not going to school!
This year, I thought it might be better. Formerly, I rarely slept, thinking about Dylan’s ADHD and how to keep him organized and on task. But Dylan is in college now, learning how to keep himself on task.
Unfortunately, this is the first year Shane is walking into school on Day One with a diagnosis of OCD.
So I tossed and turned all night, again. Mostly I worried that the OCD would ruin Shane’s day. But I also wondered if he would have friends in his classes, worried about what to make him for breakfast, worried that my alarm wouldn’t go off, thought about what I would put in his lunch, wondered if he was too old for silly notes in his lunchbox.
As a result, I got almost no sleep – as usual – again this year.
And when I woke up, at least an hour before my alarm went off, I tossed and turned until the alarm finally went off. And then I went into hyperdrive – jumped up, brushed teeth, fed dog, made breakfast for Shane, made lunch, put in a special lunchtime note….
For the first time ever, Bill was home for the first day of school. He was leaving town for a week, but at least he was available that morning. Bill had even – jokingly, I thought – considered riding to school with Shane and me. I had considered letting Bill drive Shane to school, since it was the only opportunity he’d ever had to do so.
But when I woke up, as I raced downstairs, I noticed that Bill was still sound asleep. So I planned to take the dog for a walk in the woods after dropping off Shane at school, and prepared accordingly.
I finished packing Shane’s lunch, prepared a special travel cup of chocolate milk, seat-belted the dog into the car and then went back to get the chocolate milk and lunch for Shane, who had forgotten his lunch after a whole summer without a lunchbox.
Just as we were leaving, Bill appeared.
“Mind if I ride with you guys?” he asked.
“Are you kidding?” I answered. I may be a great mom, but I am a terrible wife.
Running on empty, and having done everything to make sure Shane was good-to-go on his first day, I looked at my husband and said, “I’m taking the dog for a walk after I drop him off.”
Then I left the house with Shane and the dog, but without Bill.
There are only two more first-day experiences left – and my guess is, they’ll be sleepless nights and frantic mornings, too. And Bill will go to work, where he belongs, and I won’t feel nearly so guilty for excluding him from this rite of passage.
Shane saw a therapist for a couple of months before it got really rough. At first, Shane seemed totally fine, managing his OCD – and then he started getting flustered and frustrated and really unhappy.
Shane’s OCD was telling him things that didn’t make any sense – as it always had been – but now Shane knew it was OCD. He just didn’t know how to make it stop.
And that meant he had to face the demons.
If you swallow, the OCD would say, the whole world is going to die.
Shane is one of the sweetest, most harmless creatures on the face of the earth. He wouldn’t purposefully hurt anyone.
But here’s the way OCD treatment (called Exposure and Response Prevention) works: In spite of what OCD was telling him – that swallowing would be deadly – Shane had to swallow. He had to, because it was a human reflex action. And he had to, even though he truly believed that it would kill the whole world.
And then he felt guilty, because he was “trying” to murder people.
It was a nightmare. And it was a nightmare that we were compelled to share with the therapist.
“You might want to try medication,” said the therapist – who, as a licensed social worker, could not prescribe medication.
So we have started on the search for a psychiatrist to prescribe medication.
Dylan texted me after his first chorus class.
“I think I’m gonna mess things up and drop chorus.”
“What? Why?” I asked, befuddled. Of all the classes I thought would be a problem for my ADHD child, chorus was not one of them.
The choral director is an accomplished professor. She has two Masters degrees and a Doctoral degree, and her experience is extensive. She is a solo performer, composer, conductor, arranger and vocal group consultant. Her bio includes words like “pedagogue” and “adjudicator” (which I had to look up in the dictionary). She has worked with a slew of famous conductors, but the only name I recognize is Bobby McFerrin (who sang Don’t Worry; Be Happy).
So she is rather particular with what she expects from her choruses. For example, sheets of music need to be printed double-sided, or taped together with double-sided tape. Students must have a pencil at every rehearsal. And – imagine – she expects her students to know how to read music.
Guess who doesn’t know how to read music?
Dylan was in a group like this when he was in sixth grade. His choral director wanted all of her students to read music, so she showed them how they would hold their black binders in front of them, to follow along. Dylan held his black binder the proper way, and never looked at the sheet music. He listened to the song once, heard his part, and memorized it. Then he just sang it perfectly, from memory, for every rehearsal. When the teacher told him to look at his music, he did. But mostly he looked straight ahead, because he didn’t need that music.
Dylan also learned how to play the piano – without lessons. He can play almost anything – without proper technique, and without sheet music. In fact, if you give him sheet music, it just sits there.
Dylan has been in several choral groups. And he spent some time with his voice instructor, practicing reading music. But at the college level, things are a bit different.
And he has to bring a pencil.
I spent the entire weekend, and well into the following week, worrying about him dropping chorus. I didn’t want him to go an entire semester without singing, although he is taking voice lessons on campus as well.
I worried and fretted. I studied all the other choral groups. In fact, at one point, I (literally) accidentally signed up Dylan for a smaller ensemble. Fortunately, he was able to quickly drop it, no harm done.
Bill and I talked about how important it is for him to learn to read music, and knew that he would learn if he stayed in this particular chorus. Plus, Dylan would be in a world-class chorus!
But he could forget his pencil once too often, and fail the class.
After five days, Dylan returned to his chorus for Day Two. It was the last day to drop a class, and he didn’t even want to go. But Bill told Dylan to try it once more, just in case it had been simple, first-day jitters.
So Dylan went to class, one more time, just in case. And after that class, I got another text: “I’m definitely going to stay in this class.”
Huh, I thought. All of my worrying was for nothing – again!
“Why?” I texted back. “What changed your mind?”
“We sound really good,” Dylan said.
So Dylan is now in a world-class chorus, where he will learn to read music. And he can stay in that chorus, too, as long as he remembers his pencil.
After Dylan went to college, Shane had only two scheduled events in his immediate future: a surgery to remove his wisdom teeth, and the beginning of 10th grade.
Needless to say, these were not Shane’s most anticipated events of the year. But he went in to have his wisdom teeth removed without much anxiety, and his OCD seemed to take a backseat to rational thought.
So I thought Shane did really well. In fact, he did DO really well. The surgery went perfectly.
But appearances can be deceiving.
Driving to the surgical office, Shane seemed to be comfortable and talkative. In the car, I asked, “Do you have any questions? Are you concerned about anything?”
“Not really,” he said casually. “I’m going to be asleep.”
We sat together in the waiting room, just chatting. The nurse opened the door and said, “Okay, Shane!” He stood up and looked at me.
And I didn’t get up. Having been through this surgery with Dylan, I knew I wasn’t going into the surgical room with Shane.
But somehow Shane didn’t know that.
Several days after the surgery, Shane told me what happened next.
“I didn’t know you weren’t coming in,” he said. “So I went back and they put those things on my chest, like you see in the movies, to see what my heart was doing. Those little stickers with wires on them?”
It took me a minute to understand. “An EKG?”
“Yeah, and then we sat there for a long time. They kept saying, ‘You have to calm down; you have to calm down. Just relax!’ I felt like I was calm. But they just kept saying I had to calm down for the longest time. Some lady came over and talked to me; I still don’t know what her job was. She just kept asking me questions about my life.”
“So your heart was beating too fast for them to start the operation?”
“I guess so,” Shane said. “And I just had to sit there for a really long time with those things on my chest and them saying I had to calm down.”
Eventually, his heart rate slowed enough that they could start the procedure. And everything went well.
But I learned something in Shane’s retelling of the story. In the past 15 years, I’ve always been amazed at Shane’s calm demeanor. He’s always been a laid-back kind of guy. Outwardly, this doesn’t change.
Apparently, though, Shane has a pretty serious case of anxiety on the inside. Between the OCD and the speedy heart rate, I am learning – the hard way – that Shane could use some calming techniques for his life.
So in addition to encouraging him to learn how to recognize anxiety in therapy, I’m going to see what I can find for him to do at home. If OCD is rooted in anxiety – and everything I’ve read said that it is – and the stress of Dylan’s leaving exacerbated it to the point of near insanity – then maybe reducing stress should be Shane’s number one priority.
And thank goodness: that is something with which I can help.
Dylan is at college.
I want to write one of those blogs about how much I miss him, how empty the house is without him, and how I can hardly stand him being ten hours away and not knowing what he’s doing.
But I am thrilled to say: I can’t write that.
I miss Dylan, but it’s only been a week. In that week, he has not only called me – but he’s Facetimed me, which is something I had never considered before he left. It’s like having him here! He is sitting there in his room, doing stuff, and I am right there with him.
I realize that these talks won’t happen – and haven’t happened – every day. But just the realization that sometimes they can has made me ecstatic.
I love seeing his face. I love hearing his voice. I love seeing where he is, what he’s doing. It’s my favorite thing.
Dylan has already had his first and second days of classes. He’s done whatever he needs to do for his accommodations, although I’m betting big money that he hasn’t given his paperwork to his professors yet. But he did his homework right when he got it – a brilliant idea – and even had some time “off” this weekend (which scares me).
He’s texted and snap-chatted me. He’s spent a lot of time ignoring me, because he’s making friends. Those are the hardest days for me, and the brightest for him. So I try to back off and let him enjoy them.
And he’s spent an inordinate amount of time in his room, so he still has a little time to talk. We even managed to get into an argument one bright, Saturday morning – across all the miles – about whether or not he should audition for an a cappella group.
The interesting end of the argument: Dylan gets to decide. Pestering him one way or another does no good at all, because it is his decision!
And this is how it should have been for years. So I’m not writing that blog about crying my eyes out until the wee hours of the morning. I’m writing a blog to say that I am happy for my son. He’s doing what he wants and needs to do for himself.
Yes, I miss him. But I’m actually, truly, honestly happy for him.
So Dylan is at college. And Shane just got his wisdom teeth removed. And I don’t feel like writing one, single word. I will, soon, I’m sure. But for right now, I just need to do nothing.
Five days before Dylan went to college, on the way home from Shane’s therapy session, I nearly ran over a bird on the road. It was sitting eight inches into oncoming traffic on a very busy street near my house.
I screamed something and pulled the car over, jumping out. I ran barefoot with a flip-flop in one hand, waving it at oncoming traffic to call attention to the bird. As I got closer, with cars and trucks roaring by, the bird sat very still. It didn’t even notice my approach.
It was a bright red cardinal with a blue head – a molting male, I think. Gorgeous but stunned, he just stared at me as I walked around it. He didn’t move at all.
I had no idea how to save him from the onslaught of cars, so I waved wildly with a flip-flop. Miraculously, he flew to the other side of the road! He didn’t fly high, but he went safely into the brush.
I got back into my car and drove away, happy to have helped.
The next day, I was at my computer when I saw a bird hopping around on the deck outside my window. It was the exact same bird.
He was easily a mile from where I’d seen him more than 24 hours before.
There’s no reason in the world for a bird to hop around on that deck. He seemed to be looking for something, so I took some bird seed outside and tossed it into the grass, but the bird didn’t seem to be looking for seeds.
About an hour later, another cardinal attacked him in our driveway. The molting cardinal didn’t seem to be able to get away, or to fight back. So I ran out – again – and saved him from the attacker.
Half an hour later, the red-and-blue cardinal was still sitting quietly in my yard.
So I went outside. Bill and I caught him in a box. He could still fly, but not into a tree. I figured my house was safer at night, and we could take him to the wildlife rehabilitation center in the morning.
I put a little water dish and some bird seed into our dog crate, and put a towel inside for a bit of privacy. It was very quiet in the house. The bird sat still for a minute or two, and then he promptly went to sleep.
I thought about the mile trek that bird made, from the busy street to my house. I thought about him surviving the night, with all the predators roaming around. I wondered what caused him to be so confused, why he was sitting in the road, why he ventured to my deck.
Shane said, “Maybe God sent him to you, to show you he was all right.”
I smiled. “Maybe He did,” I said.
The bird slept peacefully in the dog crate for a couple of hours. And then, without a sound, the bird died.
Bill found him, and I couldn’t believe he had come all this way just to die. I wanted to remember him sleeping so soundly.
As Bill was cleaning out the crate and burying the bird, I said, “You have my permission to lie. You can tell me that he just flew away!”
And Bill said, “Up there!” He pointed to a hundred-foot tree. “He flew way up into that tree!”
I smiled, for a half-second, believing it.
And then I started to cry, because that was what I wished most of all for that little bird.
A few days later, I took Dylan to college and watched him fly away.
Dylan is leaving. It is happening now.
The word “stressed” doesn’t cover how we – as a family – have been during the few weeks before Dylan left. Yes, it’s hard. Moving is hard. Leaving is stressful. Change is stressful.
But that wasn’t nearly enough to describe the feeling.
We know we are going to miss Dylan. We know the dynamic in the house will never be the same. Some life is going to be kicked out of our souls because Dylan won’t be here, with all of his enthusiasm for life and music and the world.
While it feels like Dylan is just a big ball of energy most of the time, and that the energy is sometimes misplaced because of the ADHD, this summer brought a realization that Dylan was more than just overzealous energy: he is the energy in the family. Even when he wasn’t home, he evoked strong emotions. And he will still evoke strong emotions – for all of us.
Mostly, Dylan is big and bold and beautiful. He is like a blazing light that shines into the room, making everything sparkle.
When our dog died in December, Dylan called Xena “the soul of our family.” And there was something to that, certainly. Xena brought us together in a way no one else ever will.
But I think all of us play our parts – and together we make the soul. And with Dylan not here, what will become of our family’s soul?
I recognize that he’s not dead, of course. I am thrilled to know that he’ll not only be back, but that we’ll be able to spend time with him on the phone, texting and face-timing, and that we’ll even get to see him in person, in action, on the college campus. I’m excited for him to keep growing into an adult, to live his own life, to be his own person.
And I know beyond a shadow of a doubt that Dylan is going to be where he belongs, doing what he most needs to do, and becoming an even better person because of it.
But there is going to be a huge hole in our house when he leaves, and nothing else in the world will be able to fill it.
“Sad” isn’t the word for what I feel, and neither is “utter despair.” I’m crying, but it is more for something I have lost than for losing him. I know he’s going to be great, no matter where he lives.
I just feel like I spent my whole youth wishing I had some reason for living, and that when Dylan came along, I found that reason. And Shane completed my reason for living.
I am Mom. It may not be enough for everyone, but parenting is the only thing that ever made me feel whole. And I will still be a parent – but not to my baby Dylan, who – as a toddler – so lovingly bowled me over when he ran into my open, waiting arms.
My arms, though, will be wide open and waiting, if he ever needs to return.
Shane’s OCD began to dominate his life, rather suddenly, sometime during our summer vacation at the end of July.
Back in the spring, he was worried about things. Shane was afraid to read his homework “too well” for fear of getting a grade that would set his GPA “too high,” which would get him into “too good” of a college and cause him to get a job that he didn’t want. If he got through his homework, then, his life would be mess as an adult.
Instead of worrying about failing, Shane was worried about succeeding. And the thought of his life being ruined by how well he did – or didn’t – read his homework assignment was debilitating.
But a few weeks later, Shane’s OCD had progressed – in his mind – to a much scarier place. He still couldn’t concentrate on reading. But he was also worried that if he did something involuntarily – move his hand or swallow – he could inadvertently destroy everyone on the planet.
Therapy’s answer was to have him do exactly what the OCD didn’t want him to do. So Shane moved and swallowed, fully expecting that he was somehow killing people because of his actions. He felt guilty and horrible and didn’t want to do anything because of both the risk that someone would die, and the guilt that he had caused it.
Shane knew intellectually that he wasn’t being rational. But his thoughts were taking on a life of their own – which is exactly how OCD feels. It’s like having a bully inside the brain, telling you things that aren’t true just to get a rise out of you.
And with Dylan on the verge of leaving home, Shane is getting worse instead of better – possibly related to stress.
His therapist suggested medication – which must be prescribed by a psychiatrist, which Shane doesn’t have. So I am seeking psychiatrists.
I am researching like mad on the internet for natural assistance – even temporary help: supplements, amino acids, ways to boost serotonin – anything to help Shane now. Vitamin B, a serotonin booster, seemed to make his OCD worse. So he tried 5-HTP, an amino acid that helps with serotonin production. It didn’t seem to do anything at all.
There’s some evidence that an overabundance of glutamine in the brain might exacerbate OCD. This made sense, given the crap that Shane eats, but the brain has very strong protection (called the blood brain barrier) to keep glutamine out. So I bought some NAC to boost that barrier and prepared Shane with a list of chemical glutamine items. I warned him that he might need to change the way he eats, but most of that stuff isn’t in the foods he eats.
Shane’s symptoms are 100% normal for someone with OCD, but they are scary symptoms. I am just hoping and praying – and praying some more – that Shane is all right.
I just want him to be all right.
