His Own Initiative

Our oldest, Michael, left the country one week ago today with excitement over studying and living in another country and a passion to become more fluent in another language. The hubby cried as he hugged our son goodbye, then cried more as we drove home, and once again as he searched birthday card after birthday card in pursuit of a suitable one for our younger son, Blake’s, nineteenth birthday. The hubby’s tears reflected many things: the sadness at watching Michael leave after several weeks in which they spent many close moments together, the bittersweet realization that we will be empty-nesters in a few short weeks, the juxtaposition of the personalities of our two young men – one who craves new experiences in the world and one for whom his bed and our sofa seem experience enough.

Michael’s parting recommendation to his brother had been that he begin to venture out into the world, that he practice the skills he will need when he moves to college in another state next month. He’d worried lovingly about his brother and whether he’d have the skills to live in his new environment. He’d proposed a plan to his brother in which Blake would go out of the house, perhaps a couple of times each week, so that he might gain experience and confidence, and perhaps a little momentum. Blake initially embraced the idea, but it quickly seemed to fall flat as I wrote about in my previous post (“A Plan That Lost Steam“). Depression and anxiety seemed to win out.

A Flash of Hope

I had resigned myself that Blake was not going to follow the plan he and his brother had plotted out. I expected to see him step back from life even more. The hubby and I were true to what we had promised and did not bring the plan back up. To be honest, I even stepped back on our therapy-planned morning routine of waking Blake up. Sure, I still saw that he got up and out of his room, but with much less rigidity and urgency. I felt deflated and spent time searching my mind as to how I would live as meaningfully as possible regardless of what would come with either of my sons in the months ahead.

Still, there were things to be done before Blake can leave for college. There were apartment supplies to be ordered and bank accounts to be transferred (Blake still only had a custodial account in my name). So, I continued to go through the motions of preparing for the move. On Monday morning, Blake and I prepared to go to the bank to get things in order so that he might obtain the all-important debit card.

“Do you want to go grab a coffee afterward?” I asked him just before we left.

“Oh, I was planning to go there myself as a way to get out today. You know, like we talked about with Michael. Is that okay?”

I was a bit startled, a little excited, but tried not to show it.

“Of course,” I said. “Do you want to take separate cars and meet me at the mall, then? We can walk over to the bank, then grab a coffee, and I then I can leave so you can have your time.”

So, we did. Blake navigated his way to the mall parking lot and we met up and walked to the bank and completed the business of transferring his account into his name. Then we walked back to the coffee shop, where I grabbed an iced coffee and quickly made myself scarce. Blake set up his computer at a table.

“I wish I’d brought a chess board,” he noted. “I’d ask someone here to play with me.”

When I got home, I dashed off an email to the hubby at work: “Thought you’d want to know…

And Then Another

On Thursday, he did it again.

“Mom, since we need to go out on another college planning errand today, can I use it as a way to launch into going out on my own again? It kind of helps ease me into it. I mean, since we are going out already, I can just go off on my own when we’re done. I’d like to go to the board game store.”

“Sure, honey. Let’s meet up at the store. We’ll pick out supplies and then you can head on your way,” I’d suggested.

About a half hour later, Blake showed up to meet me.

“Twenty-five minutes to find my way here!” Blake shook his head.

“Hey, you found it and you did it safely,” I replied.

Then we proceeded to giggle our way through the store, Blake being more frugal than I, me reasoning that the slow cooker he was choosing was going to be too small. As we finished, I bid him fun on his adventure. A couple of hours later, he was back home. He’d completed his mission, and had even observed a group at the store playing a Dungeons and Dragons game.

“I tried to join in,” he said, “but they were already too far in. They have a board game night there every other Thursday.”

Whether Blake will continue his missions out into the world we shall see. This week, my son, the one who prefers his bed and the family room couch, went out twice – for no reason other than to practice doing it. No one cajoled him or made suggestions. He just did it himself. While we cannot show great excitement because we know, from experience, that this will just send him back into hiding, this weekend the hubby and I are doing happy dances when no one is looking.

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A Plan That Lost Steam

Michael, our 21-year-old, is getting ready to leave to study abroad for the remainder of this summer. He sat the hubby and I down the other day and told us he was worried about Blake’s emotional state and his upcoming move out of state to begin college.

“He’s really not ready to go,” Michael observed. “He feels like a disappointment to you guys, especially when it seems that everything is based on whether he gets up in the morning or not. And he doesn’t respond well to tough love. It just makes him shut down more.”

“So what are you thinking?” I asked him, as the three of us sat on our back patio.

“I think he needs a mission, a purpose. You know, little tasks to get him out of the house. Things he needs to practice to live away from home. He can go buy his groceries so you can get an idea now what he’ll need to spend on them and so that he’ll get used to buying what he needs. And he can go to the library or the coffee shop and set up his computer and practice writing from there. You could give him a small stipend each week so he could practice. I think it would make him feel accomplished. But,” Michael continued, “I don’t think it should come from you guys.”

“What do you propose?” asked the hubby.

“I’ll talk with him tonight,” Michael noted. “I’ll see what he thinks and help him to make it his. If it’s his idea, he might be willing.”

So, we parted leaving this between the boys.

Michael Makes Inroads

The next morning, Blake stopped me early.

“Mom,” he said, “Michael and I were talking last night about ways for me to get ready to leave for school. Can we talk with you and Dad tonight about it? I think it’s a good plan.”

“Sure,” I answered. I tried to sound calmly enthusiastic, but inside I was kind of excited. Was my son who regularly chooses bed and the sofa to leaving the home actually wanting to launch a little bit?

The four of us met last night and Michael and Blake led the talk. Michael shared how doing these kinds of things would have helped him make the transition a little easier when he left for college. He thought it would give Blake more confidence to live in the world

And Then I Watched it Happen…

Blake went from mildly enthusiastic to questioning to looking downright terrified. He started finding reasons it wasn’t a good idea. He started worrying he’d be judged and held to this standard. He worried he’d fail. It didn’t matter what anyone said. The hubby and I noted we wouldn’t hold him to anything. It was his plan, and if he followed it, we would cheer him on. If he did not, we wouldn’t comment. Michael stayed positive and light and shared how beneficial it could be. I was proud of how he held his own and supported his brother. In the end, we left it that Blake could decide whether he did it or not.

And then, as I got ready for bed, he called me into his room.

“It’s just so hard to get out of bed,” he said, staring off into space. “Bed is the only place that feels good. It’s like having a hug and having to leave it. Nothing in the day feels good and I just distract myself with YouTube or games all day. And then it’s even hard to go back to bed knowing I’ll have to do the same thing again tomorrow. Living is hard and I’m too scared to die – so I’m just in that in between space.”

And there was little more I knew to do for my son than listen, acknowledge, and snuggle him with a tight squeeze until he dismissed me with a, “Good night, Mom.” For all my professional training and experience, I do not know how to move my own son from here to there. And right now, I don’t know that there is anyone else who knows how to either.

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.

 

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.

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 Matter, Too

Image courtesy of digidreamgrafix at FreeDigitalPhotos.net

“More importantly, how are you doing?”

This question from Blake’s therapist takes me by surprise and throws me off balance for a moment. Blake has just walked out of the room, shutting the door behind him. Nature calling. I’m just finishing paying for the session, thinking I’m about to walk out the door, too. The therapist isn’t quite done yet.

“What do you think?” he asks, and then he points out, “He’s talking about serious stuff now.”

He’s correct. Blake only started coming to therapy when he wanted to take some control of the interventions his therapist, his dad, and I were implementing. He was angry. He came to bargain. In recent sessions, he’s talked about depression, his dislike for himself – just the mere concept of “Blake,” about his disconnection from the world. Today was no exception and, as has begun to be our routine, I sat like a fly on the wall watching the interaction between Blake and The Doc, wondering what I was doing in there. Although the therapist in me is fascinated by observing what’s going on.

It’s Not About Me, Right?

We’ve been seeing this therapist in hopes that our 18-year-old can overcome his OCD and severe depression and ready himself to live in the world.  So I just didn’t expect it when the therapist asked about me.

“I have good days and not so good days,” I answer.

“Well that’s a pretty non-specific answer,” the therapist says with a smile.

“I worry about him,” I say, “but I’m learning patience.”

The truth is, I’m kind of disconnected about how I am. I’ve been so mesmerized by the therapy session, I lost myself a bit. It’s only later in the day, as I ponder the question, “More importantly, how are you doing?” that I think over my frustration at watching my son climb back into bed multiple times each morning. It’s later that I recall the heartbreak at hearing my son talk about how life isn’t worth the good moments when he considers how awful the bad moments are. It’s later that I remember part of me sinking inside as I watch my son wash his hands immediately after handling money or tiptoeing around areas that the dogs might have contaminated.

At the same time, I’m touched by The Doc’s inquiry. As much as my son is suffering, family members are, themselves, affected when their loved one has OCD, depression, or other mental illnesses. If we aren’t directly involved in rituals, or trying to get them out of bed, we are worrying about them. So I’m appreciative of this simple act of kindness and caring. It resonates in me. It reminds me that we family members have to remember to care for ourselves in the face of our loved ones’ struggles. We have to be mindful of our own well-being. If we aren’t, we can become impatient, bitter, angry – basically of little use in this war called mental illness.

So, thank you, kind therapist, for reminding me that I matter, too. It opened something up inside of me and I feel just a little more alive and grounded. I feel less stuck in the mess with my son, and more like myself. And this morning, when I allowed myself to take a long hike in the nearby mountains, I was just a little more open to taking in the scenery and appreciating it, instead of having the specter of depression and OCD hanging over me. Yes, I matter, too.

When Words Don’t Mean What We Think They Do

I was recently reminded that some of the most simple things we say to one another, words that are meant to inspire, connect, or that are simple formalities, can mean something very different to someone struggling with depression or other mental health issues. On a daily basis, there are words that pop out of our mouths out of habit. We usually don’t give them much thought, yet just last week, Blake gave me a window into a different perspective on words that I use.

“There’s something that I’ve been struggling with a lot recently,” Blake says. “People keep asking me how I’m doing.”

“Yes, they do that,” I say.

“Well, the thing is. I’m not sure what to say. I mean, what do you say when the answer to that question, ‘How are you?’ is, ‘I’d rather be dead?’ I don’t think that’s what people want to hear.”

He repeats this quandary to his therapist.

“Yes. It’s one of those formalities,” the therapist says. “I sometimes answer, ‘More or less.’ It confuses them.”

Blake laughs at this response, and then says, “There’s another thing people say. When things go wrong they say, ‘That’s life.’ ” Then he sighs and hangs his head. “That’s life.”

An entire conversation about depression ensued after that, but I took something away from those moments. It made me realize, more than ever, the power of words and how they may be construed by someone who is profoundly depressed. I realized that by saying “That’s life” to someone who is struggling to find even one reason to live, I may be reinforcing that life is nothing more than a series of bad stuff. I may be reinforcing the view of a world the depressed individual already finds so oppressive, so defeating. “That’s life. First it sucks, then it sucks more.”

I also thought about the power of asking, “How are you?” When we ask, do we really want to know? I thought of the depressed individual knowing what the socially appropriate answer is, and recognizing that, by giving it, they are telling a lie. Maybe there’s the feeling of being a misfit in a world where most people seem to be able to answer, “Good,” or “Fine.” Perhaps there’s a desire to say how awful they feel, but not wanting to be rejected for saying so.

I’m not suggesting we stop asking, “How are you?” Nor am I implying that we should drop, “That’s life,” as an expression when we want to explain to someone that the world is not perfect. I’m just taking a step into another frame of reference and, perhaps, taking you there with me for a moment. I just hadn’t ever realized quite the way my profoundly depressed 18-year-old son hears things, and I was given the opportunity to step into his perspective ever-so-briefly.

Of course, for Blake, it doesn’t end there. In his therapy, he is learning how to respond to the “How are you’s.” He is learning that there are some people he can be honest with, and other instances where he might give a social answer. He is also learning to challenge his view of the world. He is learning that “life” is not made all dark by some challenging moments. He is learning that there are shades of gray, and he is even beginning to notice moments of joy. For his father and I, it is a privilege to share in the journey.