Which Way From Here?

Sometimes treatment moves along at a snail’s pace – or even seems to go backward

When I began writing this blog five years ago, my son, Blake, was 14 years old and had recently refused treatment for his Obsessive-Compulsive Disorder (OCD). He’d had a relapse over the previous school year and, despite access to terrific treatment from specialists in Exposure and Response Prevention (ERP), he ultimately wanted to do it his way.  I started writing as a way to express what was going on in my head, to document what was happening, and to sprinkle in stories of being an OCD specialist while living at home with OCD.

As time passed, my writing shifted. In many recent posts, I’ve focused on the depression that settled in over Blake, causing my hubby and I to make the decision to ask him to defer enrollment in college so that he might take care of himself and gain some skills. We entered therapy as a family. First, Blake refused to participate, and he launched into 18-year-old sized tantrums – turning over the belongings in his room, slamming doors and shutters – each time we introduced a new expectation that was meant to move him toward improved functioning. Finally, he came to treatment as a participant and even started meeting with the therapist without us. I’ve documented his struggles, our struggles, and his progress.

Now, Blake Turns 19…

In about a week, Blake will turn 19-years-old. I haven’t talked much about his OCD lately because we’ve mostly been dealing with depression. Blake’s sleep schedule became greatly dysregulated at the end of tenth grade. He sometimes slept until 10 at night; he was up until 3, 4, or 5 in the morning. Over this past year, he’s been awake all day most days. This has mostly been due to my waking him each morning if he doesn’t get up with his alarm. It’s something we agreed on with his therapist: no sleeping all day in this house; if you don’t get up on your own, we will wake you up. But that last hurdle, getting up on his own and staying awake, has been a challenge. Sometimes he does it. Sometimes he does not. In recent weeks, there’s been a slide backwards. He hasn’t gotten up on his own, and he falls back to sleep all over the house for great chunks of the day.

In our most recent therapy session, I joined Blake and the therapist and we focused on where things are at. Blake was dug deep into his position that “nothing” will work and, yet, he was unwilling to try anything new. Top that off with an essential element: Blake does not really want to accept that anyone else might know better than him and what his head is telling him. His brain tells him he’s a worthless screw-up and that it’ll never get better – and he listens to it. I will vouch that this young man is not worthless in any sense, but many steps forward that he has taken have been with pressure from others. I cannot recall a moment where he has honestly said, “I need help and I’m willing to allow others to walk me through this.”

Pivotal Moments

I watched as Blake’s therapist, a longtime specialist and pioneer in OCD treatment, dug in himself. I could see the struggle in him as he could see the road my son is headed down. He pointed out the direction Blake might be going in his quest to continue to do it Blake’s way.

“Blake, my sister’s mental health issue was destroying her life. We begged her to get treatment, to do it another way. But she continued to choose to do it her way…and it killed her.” I could sense the anguish in the therapist’s voice as he shared his personal story of losing a family member to refusing to get proper help. It’s kind of amazing when you reflect that the professional in front of you is a human being.

He continued, “It’s clear that coming to therapy once a week isn’t getting you to where you’d like to be. It might be time to think of doing something more. It might be time to think about residential treatment for OCD.”

“How would that help?” Blake asked. “They’d just be doing it for me.”

“It would help to have therapists and counselors and staff around 24 hours a day to help you learn to live differently.”

“It wouldn’t work. They’d just be forcing me.”

“You’re right. It wouldn’t work if you went into it with the same attitude you have. It wouldn’t work if you continued to see it as something others were pushing you to do. It might work if you were to recognize that doing it your way isn’t working and if you surrendered yourself to something new. You’d have to see yourself as worth it.”

“I’d feel like a freak,” Blake said quietly. “If I was so desperate as to go live in a hospital, I’d feel like a freak.”

“Blake,” I broke in, “if J were to check into a residential program for what he’s going through, would you think he was a desperate freak, or would you be proud of him for getting the treatment you know he needs?” I asked this in reference to someone close to us Blake worries about.

Without a pause Blake noted that he would be proud – and he made the connections.

“I guess I have some thinking to do,” Blake acknowledged.

An OCD Program?

You may have noticed above that Blake’s therapist did not suggest Blake consider going into a residential program for depression. He suggested a residential program for OCD. He suggested it at least twice (I didn’t include all the dialog). Why an OCD program? We never got to talk about it, but I think I know why. I believe the therapist thinks that much of what is going on with Blake can be traced to his OCD. Blake has an extremely low tolerance for uncertainty or discomfort of any kind. He actually shuts down and becomes unmovable when faced with an anxious moment. He prefers to live in a comfort zone according to rules he has determined are acceptable to live by (but that are actually dictated by OCD). He’s been living a life of religious rules for over six years that has been driven mostly by fear rather than joy and meaning.

Blake has something to think about. How much thinking he is doing, I do not know. I know he got himself out of bed for four days in a row – and he felt proud. And then he sunk into three days running of not getting up on his own and falling asleep for large chunks of time. He is mere weeks from leaving our home to finally beginning college in another state and living in an apartment with three roommates he will not know. If he elects to go to a residential treatment program, what would become of that?  For now, I don’t know. I don’t know what happens if he goes to college, can’t get out of bed to go to school, and returns home. I don’t know what happens if he falls backward enough not to be able to leave home. Like all things that are in the future, I am waiting to see. I’m hoping for the best, but not deceiving myself in acknowledging that this just might not go well.

 

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These Spring Evenings

Spring has finally arrived in our area. The plants are blooming and blossoming. The days are warmer and the nights are still cool. The hubby recently completed a project of changing over our landscaping to a more water efficient and drought tolerant one. Consequently, our backyard is a joy to be in right now. Every evening that I get home later than the hubby, I find him sitting in a cozy chair on the back patio just enjoying. Frequently he is flanked by a dog on either side, and both of these appear equally as content as their owner.

Along with spending more time on the patio, the hubby has suggested we move several of our evening meals in the last couple of weeks outdoors. I’ve obliged him, and therein lies the issue for Blake. I’ve shared before that Blake’s Obsessive-Compulsive Disorder (OCD) has played a back seat role to his depression of late, but it is at times like this when it shows itself more.

“Are we eating outside again?” he asks.

“We are.”

“I’m guessing you’d like me to join you…”

“We’d love you to join us.”

I can feel the hesitation, the thinking, the rationalizing, the many things that must be going through his head. When we first realized Blake had OCD it showed itself in fear of contamination. Although it has had many incarnations, his OCD has never quite abandoned attacking him on the issue of things being contaminated. Our patio table is contaminated (it sits outdoors all the time). The chairs are contaminated (ditto). There are bugs out there (they might land on you or, heaven forbid, your food). I think even the outside air feels a little contaminated, but I’m not quite certain about that. It’s no wonder Blake is hesitating.

On one particular night, we have relatives over. We barbecue. I prepare the meal. The hubby prepares the table outside. Blake, as he has for several years now, prepares his own meal. I head outside with my full dinner plate and notice Blake at the indoor dinner table. He’s putting together his plate. One by one, my hubby and our guests all settle in for our meal. I’m guessing Blake will not be there, but I’ve guessed wrong.

Moments later, Blake has a full plate and he carves out space for himself. The rest of us reposition ourselves. He sets his plate down and leaves. He comes back with a can of soda in hand. I know what this is. Soda for Blake is liquid courage; it’s motivation and reward for doing something that is difficult. He joins us at the table. He eats his food. He actually participates in the conversation. At some point everyone except Blake and I have left the table for seconds or for dessert.

“I’m so glad you joined us,” I note. “How are you doing?”

“I’m glad to be here,” he says, and then he answers, “I’m uncomfortable. I’m definitely uncomfortable.”

I ponder this for just a second or two.

“Uncomfortable is good,” I respond – and it is.

We Have to Want It Less Than They Do

Image courtesy of Nanhatai8 at FreeDigitalPhotos.net

This week I attended a daylong community OCD event. The venue was completely full, there were terrific speakers, and there were lots of opportunities to connect. At the end of the day, there was a gathering to re-cap and ask questions. One parent stood up to ask a question that grabbed my heart and my attention.

The parent asked about a topic that is near to many of us who have young adult (or almost-adult) children struggling with OCD (or other mental health issues). That is, the parent wanted to know how to motivate one’s older teen or young adult to get serious and use the treatment being offered to them. I immediately felt a kinship to this parent. I wanted to reach across the crowded room and say, “Yes, I want to know that, too. You are not alone.” Yet my heart already knew the answer that was about to come.

A therapist at the front of the room took the question and tenderly noted, “I notice that many times parents want desperately for their child to get better. Yet that seems to keep the child or young adult from wanting it for themselves. They have to want to get better more than their parents want them to get better.”

And there it was. A simple truth. We parents can want what we want for our children. We can lead them to treatment. We can urge, press, plead, make deals…but we can’t be doing more work than they are. We cannot be more invested than they are. We have to want their recovery LESS than they do.

My heart feels heavy for just a bit as I hear what I already know. And my heart aches for the parent on the other side of the room. How do we do this? How do we care less when they don’t seem to care much at all (at least on the surface)? I think the answer is that we have to find a meaningful life for ourselves in spite of their mental health struggles. I think that we have to back off on the pressure and put faith in their ability to decide when enough is enough. And we have to have the courage to not pick up the pieces and make the consequences of their struggle easier – they have to be doing much of the hard work.

This is simple, in theory, but difficult in practice. As parents, we are programmed to respond to our child when we see them suffering. We are oriented toward providing comfort and to removing obstacles. With OCD, anyway, doing our job as parent may be presenting them with the difficult path toward healing, and waiting nearby allowing them the struggle of coming to the decision that there is a better life to be lived.

Glimmers of Hope on Vacation

The OCD in the Family family is on vacation. We are currently in Florida, in a small town on the Atlantic Ocean. The hubby, Michael, and Blake are in their rooms sleeping off the frenzied pace of the last five days. I walk the coast alone in what is unseasonably cold weather, but my heart is warmed by what I’ve experienced in my younger son on this journey.

Michael, our older son, has always enjoyed travel and is up for new adventures constantly. Blake, however, is a different story. He is usually extremely uncomfortable out of his usual environment. For as long as I can remember, he’s felt overwhelmed by new places, sounds, foods, smells, people, and, well – you name it. Compound this with Obsessive-Compulsive Disorder and, in the last two plus years, major depression, and you have a recipe for a very challenging family vacation experience.  We’ve gone on many a vacation where Blake stayed behind in the hotel room or the car, or only went out with us after substantial begging (usually pleading to go back to the car to wait as soon as we’d allow it).

This Time, It’s Different

This vacation, however, has been different. Blake wasn’t particularly interested in going on this vacation. As usual, he came along because we were going. Then something started to happen that none of us could have predicted; he started to enjoy himself.

I first noticed it when we were at Epcot. If you’ve never been to this Walt Disney World park (as we never had before), it consists of a Future World (East and West) and a World Showcase, which features different countries around the world in street scenes, attractions, and food offerings. After a long, cold day in the park, I began to walk more quickly through some sections of countries in the World Showcase. Blake slowed me down, though.

“I don’t know if I’ll ever make it to all these countries,” Blake said. “I want to see everything I can while we are here.” Then he proceeded to walk down every corridor and alleyway he could find.

The next thing I noticed was that Blake picked out a meal for himself at the Kennedy Space Center. Blake, whose OCD often centers around food choices (or, should I say, problems with the food choices around him), at first said he would forgo eating anything at the Center’s cafeterias. He would wait and eat food he was comfortable with back in the car. The next thing I knew, he had a tray filled with food, and even a dessert of astronaut ice cream. He joined us at the cafeteria table and ate, something he hasn’t done in years.

Last night, he had a long discussion with the hubby about all the places in the world he would like to see. What? Blake wants to see the world? He named off basically every country in the world – the more different from our country, the more he seemed interested.

“What about traveling for leisure?” the hubby asked him.

“The thing is, I’m so uncomfortable traveling, I couldn’t relax.” Blake answered, “I may as well go somewhere I can see things and learn about different cultures.”

Manatees in the Morning

This morning, as Michael, the hubby, and I ate breakfast (Blake was sleeping in), we decided to call off our manatee excursion for the next day. It was too far away, we’d have to leave too early, and it was just too cold for swimming in rivers. Plus, we’d been moving at breakneck speed for several days. It would be nice to have one more leisurely day.

We took it as a given that Blake wouldn’t mind the cancellation. So the hubby went off to call the tour company and I took a breakfast tray in to Blake.

“Dad’s cancelling the manatee tour and swim for tomorrow,” I told Blake. “That way we can take it a little easier.”

Blake’s face contorted into a pained grimace.

“Are you reacting to the manatees?” I asked.

“Yes!”

“Did you really want to swim with them?”

“More than anything,” he said, “but I can wait…if that’s what everyone else wants.”

“Let me see what I can do,” I said, as I bolted out of the room. It just rarely happens that Blake wants to do anything, and I wanted to reward his speaking up. I caught the hubby on the phone talking to the tour operator. I waved wildly for his attention, then told him what had occurred.

“Well, it looks like we’ll be coming after all,” he told the tour operator.

I went to tell Blake that the manatee adventure was on and the glee in his expression told me I’d done the right thing.

I Don’t Know What’s Going On, But I’ll Take It

Blake, wearing a hat that belonged to his grandfather, contemplates the space shuttle rocket.

I told the hubby how excited Blake was about the manatee tour. He and I marveled over the exciting things happening with our son on this vacation. The young man who normally doesn’t want to leave home, who only wants to read about the world instead of live in it, and who regularly says he dislikes himself and much of the world has had a few positive days where he seems to actually want to be here and to experience life.

Afterward, Blake and I perused the library at our lodging. He marveled over the books and wished he had more days here to sit and read. He supposed one thousand hours might do. As we passed through the hubby’s and my room, Blake shared his sentiments with his dad.

“You know, Dad, I’ve changed my mind about leisure vacations. Sometimes it would just be nice to sit and read a good book on vacation for hours on end.”

Blake Decides to Increase His Medication

Image courtesy of Sira Anamwong at FreeDigitalPhotos.net

The big news this week is that Blake has decided to increase his SSRI (selective serotonin reuptake inhibitor) dosage. Seriously, it’s BIG news. I know. I know. For many on these medications, which tend to be the first line of defense in terms of medication for Obsessive-Compulsive Disorder (OCD), this is just a normal occurrence. Sometimes you go up in dosage. Some times you go down. That’s not the case for Blake.

Blake has been on the same dose of his SSRI since he was thirteen years old (13). He’s eighteen(18) now, in case you don’t know. That’s five years on the same dose. That’s more than two years of feeling he’d be better off dead. More than two years of people begging him to increase his dosage. His psychiatrist has begged, his pediatrician has begged him, his father and I have begged him. His therapist has encouraged him and challenged his reasoning on why he won’t increase his dosage.

“I don’t like being on medication,” says Blake. “It doesn’t help me.”

“How do you know it doesn’t help?” asks the therapist. “Maybe you’re not on a therapeutic dosage for you.”

“It doesn’t help. I don’t want to change it. It won’t help me.”

“How do you know if you haven’t tried?”

“I just don’t want to.”

Last week, the conversation came up again.

“Okay, I’ll give it a try,” he says, with little fanfare or need for cajoling.

He goes home and calls his psychiatrist and has begun a higher dose. I don’t know if it will make a difference at all in his major depression or in his OCD, but it is a big move for Blake to even try. So far, he is tolerating the increase well; however it has only been two days.

In other news, his therapist asked him this week how his week was. He’d been wondering how depressed Blake had felt in the past week.

“It’s been a good week,” remarks Blake. I haven’t heard him say that in – well, I can’t recall how long.

“So, it was a good week not to get hit by a bus?” asks his therapist.

“It was definitely a good week not to get hit by a bus.”

And Blake smiles.

 

I Just Wash More Than Other People

We pull into the parking lot and get out of the car. I notice that I’ve parked kind of crooked, so I climb back in, start the car up again, and straighten it out. Blake raises a hand to signal that I’m okay now. I notice the glove. It’s stretched out and missing the tip of the thumb where Blake has pulled a thread and the glove has begun to unravel.

As I climb out of the car and we make our way to the therapist’s office, I notice that both gloves are misshapen. The wrists sit limply against Blake’s skin, like they’ve been tugged at too many times and any elasticity is long gone.  Blake is dressed in a short sleeve t-shirt and cold weather gloves. I think he stands out in this appearance, particularly with his thumb halfway protruding from the shredded threads. I don’t say anything. I know better.

I gave these gloves to Blake a few winters ago. His hands get especially chapped and painful for a few months each year. He slathers them in petroleum jelly at night and pulls the gloves on to keep the goop from getting all over everything else. Today he’s wearing them out of the house; his hands must feel extra painful if he’s wearing the gloves during the daytime.

I Just Wash More Than Other People

As we sit in the therapist’s waiting room, I am certain that The Doc is going to comment on the gloves. Anyone who has ever dealt with OCD treatment knows that embracing uncertainty is paramount, but there are few things I can feel more confidently certain about than the therapist honing in on these gloves. In a few moments, my prediction is confirmed. The Doc steps out into the waiting room and, almost immediately notices Blake’s gloved hands. He steps closer to Blake.

“What’s this?” he asks.

“Oh,” says Blake casually, “my hands get really chapped and sore this time of year.”

“Why is that?” the therapist wonders.

“I don’t know. It’s just the weather.”

“My hands don’t do that.” He holds out his own hands.

Blake removes his gloves and displays them for us. They are red and raw. It’s obvious they are painful.

“Have you been washing a lot?”

“My hands have always gotten like this in the winter.”

“How long has that been going on?” asks The Doc.

“Always,” says Blake.

Indeed, I don’t think Blake can remember a winter where his hands weren’t painful, raw, or bleeding. His hand washing at age six was my first big sign that he had OCD. It was something I’d hoped would go away. Despite education and treatment, it is still here, twelve years later. Blake knows nothing but painful winter hands.

“Maybe you’re washing too much,” suggests the therapist.

“It’s not that,” Blake says. “I just wash more than other people, that’s all, but that’s not why. The weather just does this to my hands.”

“You know,” suggests the therapist, thoughtfully, “you could try an experiment. You could decrease or stop washing and see what happens. Then you’d know if it’s the weather or the washing.”

“I don’t want to. That’s disgusting.”

To Purchase New Gloves or Not

After therapy, as we drive home, I note to Blake that his gloves have seen better days. It’s time to toss this pair out.

“But they’re the only pair I have,” he laments. “Do they really look that bad?”

“Yes, they do.”

Blake reluctantly tosses his gloves in a trash can later that day and sadly wonders what he will do to protect his hands. I ponder whether I should buy him a new pair. My inclination is to purchase them (mind you, we live somewhere where the daytime weather rarely gets below the 50’s Fahrenheit), but I wonder whether I’m accommodating his hand washing behavior if I do. He hasn’t asked for new gloves, nor has he said anything about going to purchase them himself. For now, I’m waiting.

I Don’t Want To, But I Have To

“I really don’t want to be here, but I have to…”

It’s another Thursday afternoon and, as usual, Blake, the hubby, and I are sitting in our therapist’s office. In what’s become a more and more commonplace occurrence, the hubby and I are sitting quietly on the sofa. Blake is in a chair hunched over his knees. The therapist is sitting close to Blake and is locked in conversation with him.

I’m not sure why the hubby and I are in the room sometimes, lately, but Blake wants us in there. The hubby allows his eyes to close; I think that’s how he focuses on the intimate conversation taking place to our left.

The topic, as it has been lately, is depression. Blake is describing the all-too-familiar pattern of following his depressed, dark thoughts down an endless rabbit hole of despair. Our therapist is gently directing Blake toward possibly confronting this pattern. Blake shares his perception of life holding no positive meaning. Suddenly, he seems a little breathless.

“This is really uncomfortable to talk about,” he notes. “I really don’t want to talk about it, but I have to.”

I watch him gather himself and continue. He pauses again, later – and, again, he comments. “I don’t want to, but I have to.”

I take this as a sign of bravery, a sign that Blake recognizes that, in order to gain the upper hand on his depression and his OCD, he has some very uncomfortable work to do. Later, I ask him about it, and he confirms this interpretation to me. Blake understands that he must share how he thinks, even though it is incredibly uncomfortable, so that he can move forward and begin the process of healing.

Honestly, this is remarkable to witness. We, as a family, have been though years of struggle. We’ve watched Blake succumb to OCD thinking, and then to depression. He has battled facing anything that is even the slightest bit uncomfortable. Yet, now, at age 18, there are glimmers of willingness to do the hard work – to fight for a life worth living. I recognize that there will be more struggles and steps backward, and that this will be a process. Yet, this is new and it is something I don’t think I’ve ever seen in my son before. I am so very proud of him.