It’s a Thursday afternoon and I’m sitting cross-legged on our therapist’s office floor, carefully picking baked barbecue potato chip crumbs out of the tight weave of the carpet. I absentmindedly pop a larger piece into my mouth, savor the spiciness of it, and continue my task. My hubby is sitting on the ground close by, leaning against the wall and sipping iced tea. He chuckles quietly when the potato chip passes my lips.
This somewhat absurd scene began when the hubby showed up a few minutes late to our therapy session. He’d stopped for a bite to eat across the street. He still had his drink and his unopened potato chips in his hands.
“Do you mind if I eat my potato chips in your office?” he asked our therapist.
“Potato chips leave a lot of crumbs,” I say, automatically. Then I add, looking at our therapist, whose exposure antics are well known to me, “But maybe you wouldn’t mind that.”
“Oh, that’s right,” he says. “Potato chips can be very useful. May I borrow your bag?” he asks the hubby. “Sometimes I do this with them,” he says, and he empties the entire bag onto the office floor.
I burst out laughing and I glance at the hubby, wondering how he’s going to handle this. This is the man who admonishes me for some of the things I touch with my own patients who have contamination fears. He reaches for a large chip on the floor and pops it into his mouth. Blake says nothing, though I’m sure he places his face in his palms at one point.
Our therapist asks if we’ve ever sat on the floor at a party or gathering. Of course we have. Then he asks if we’ve ever gotten off the floor and gotten a snack and eaten it without washing out hands first. We both have. Blake is still silent. Our therapist explains that people without OCD contamination fears sit on floor and touch it and then go on to eat a snack with those same hands that touched the floor. He reasons that it’s not much different than eating potato chips off the floor. Then he shifts his attention and moves in to talk with Blake.
As Blake and the therapist talk, the hubby and I each bend over occasionally to pick up a chip and eat it. Soon, it becomes cumbersome and, being somewhat irrelevant to the conversation happening in the room, one at a time, we each move to sit on the floor. We take turns eating chips, as the pile grows smaller and smaller. What first seemed silly becomes a normal process to us, until I am left with tiny crumbs that I pick out of the carpet to throw away. I imagine to myself that this might be what it is like to participate in an exposure for OCD – feeling somewhat silly or hesitant at first, then feeling fairly normal. I also wonder if Blake has taken note that mom and dad were willing to be uncomfortable, even for a little bit. If he is, he isn’t showing it. For the time being, he has bigger issues to attend to.
My Facebook feed is full of them – images of smiling young adults ready to begin their new adventures and dorm rooms decorated with more style than I’ve ever been capable of mustering, first day photos of fresh faces off to their first day of community college, declarations of pride from parents for all that their child has accomplished and has yet to accomplish ahead of them, and the teary-eyed laments of friends who are saying farewell (for a little while) to their progeny. There’s also the sharing of articles about navigating these new milestones in a family’s life, the most frequent of which I see coming from a website called Grown and Flown. Since it kept showing up in my feed, I perused said website and it is chock full of useful articles (e.g, dorm room shopping, college care package ideas, dealing with the empty nest, community college, helping special needs students adjust to college, etc.), but doing so left me feeling all the more alone.
What’s missing from all of these posts and article shares is the situation my husband and I are facing right now, the one where the young adult is not going to college/university, community college, taking a gap year to volunteer or study or travel, or obtaining/seeking employment. As I peruse my feed I wonder where the posts are that read,”I love Jake so much and he’s staying home in bed this year because he’s too depressed to get out! No job or classes for this young man. It’s gonna be a mental health year!” It could even have a photo of Jake asleep in his bed at 4 o’clock in the afternoon. Where are the website articles entitled, “When Mental Illness Prevents Your College Age Child From Doing Anything That Resembles Productivity?” I may not have dug deep enough into the websites my friends are posting from, but I could not find articles there for parents living with young adults who might otherwise be launching into some new phase, but, instead, are struggling with debilitating mental illness.
Don’t get me wrong. I do not begrudge my friends their joy, or even their bittersweet reflections, as their children begin their new journeys. I feel for the many emotions they are experiencing. Two years ago, we took our oldest son across the country, moved him into a tiny two person room, and dealt with pangs of loneliness mixed with overflowing pride. At the same time, I feel deep sadness at our own situation with our youngest son, and I’m not really sure how to talk about it with others as I watch the images and articles of what might have been scroll by.
When Things Don’t Go According to Plan
I never imagined that I would have a child who would finish high school and not be ready to attend college or begin a job. I do not think parents imagine that their child will develop a severe mental illness and not be able to do what his or her peers are doing. My guess is that most have big hopes and plan in that direction – my husband and I certainly did. With one child, that’s the way it went. With our second, it has been different.
Our younger son, Blake, has had his share of struggles. He was diagnosed with Obsessive-Compulsive Disorder (OCD) at age seven. He went through effective treatment, and has had periods where he has done very well. As a teenager, he had a relapse, and it was difficult to engage him in treatment, despite much begging and pleading on my husband’s and my part. When depression began to settle in on top of his OCD, his basic functioning suffered tremendously. He withdrew more and more from the world and lost joy for most activities. His sleep wake schedule became reversed, and the future felt dismal.
My husband and I propped Blake up. We supported him in school; we practically pushed him through his senior year. And we kept hoping for the best. It was exciting when Blake was accepted to the school of his choice, one that would lead him on a career path he had been talking about since he was seven. Yet, as senior year drew closer to the end, we had to face a painful truth. Blake was not getting better; he was getting worse. Sending him to another state to live in an apartment and enrolling him in a grueling program would spell disaster.
With guidance from our family therapist, we told Blake that we would not be sending him to school this academic year. We asked him to defer his enrollment for one year (something his school is very supportive of) so that he could focus on getting emotionally healthy. Blake was not a fan of our decision, to say the least, and, initially, he shut down even more. However, my husband and I feel secure that we made the decision that was best for our son and our family. Ultimately, our hope is that, with time and treatment, our son will be much better equipped to head out into the world.
It’s an awkward road, though. Frequently, people come up to us asking what Blake is up to this year. When I say that he is taking the year off, that answer is inevitably followed by the question, “Oh, so what is he doing with his time off?” Initially, I felt the need to fully explain the situation to people, but that was awkward for us both. Now I simply say that he is taking the year to fully prepare himself for what’s next. It works.
It’s also an incredibly isolating experience. Back to the Facebook feed. While I am watching and celebrating other young adults I know headed on to something new, I feel alone in having a son struggling so greatly. Oh, there are parents who connect to each other. We do so at conferences, in online support groups (and some in person), and through specialized groups on social media. We see our lives mirrored in articles we find on mental health websites and blogs. Rarely do we see what we are going through running through our social media feeds, or in articles that are widely shared in the mainstream. Sometimes I feel marginalized or irrelevant and wish that mental health issues, such as the ones we are facing, were just out there in full view and with widespread discussion.
What If Someone Wrote That Article?
If I were to write an article that were to reach out not just to parents of young adults struggling with mental illness, but to all parents of young adults, I would make it infinitely clear that there is no stigma in facing mental health challenges any more than there is in facing physical health challenges. I would note that, just as some young people become physically ill and must delay plans to take time to recover, so do some become mentally ill. I would point out that, by taking the time to get treatment now, a young person increases their likelihood of success in their chosen path. And I would be emphatic that we ought to celebrate the young adult who is working on their mental health, just as we celebrate the one who is moving into that dormitory this week.
Maybe, with that kind of widespread awareness, I would start to see something new in my social media feed. It might read something like this:
“It is with great pride and joy that I share that my young adult is taking this year to really take care of themself. It’s been a tough road, and the struggle has been real, but this is one brave kiddo who has the courage to get help and to heal. I love you, my child!”
“You can never win or lose if you don’t run the race” – Psychedelic Furs
Blake is curled up in a ball in the therapist’s office. His knees are pulled up against his chest and his face is buried in his legs. I’m like a fly on the wall as I lean closer to the hubby and witness the scene between my son and his psychologist. It’s almost like we aren’t there, and I try to remain as unobtrusive as possible.
“This is really uncomfortable for you,” the therapist says.
“I’m always uncomfortable,” Blake answers, his voice muffled and pained from between his legs.
The therapist is working to get Blake to agree to adding some structure to his day, to begin to move back into life. Blake frequently spends his days sleeping, or playing video games. He feels like “a failure,” but he doesn’t act to reverse that. He sinks deeper and deeper into depression.
The therapist moves in close. He is mere inches from Blake. “It gets difficult for you when it’s time to take action.”
“I don’t feel like doing anything will help. I don’t feel like doing anything.”
The therapist pushes on, softly, but not backing down. “You have depression, Blake. And you have OCD, and those two frequently come together. Part of your depression is biological – and the natural course of that is for it to get worse. It will tell you to keep doing nothing and you will feel worse.”
“But I don’t feel better when I do something,” Blake replies.
“Here’s the thing,” the therapist says. “Feelings lie. And there’s a lot of hard work ahead of you. The truth is, the first time you do something, you won’t feel better. Feelings are the last thing to change. You have to change your behavior first.”
On the couch, out of Blake’s view, quiet tears roll down my cheeks. I am touched by the tender interaction between my son and our therapist. The therapist has just shared with Blake the deeply personal story of two family members – one who chose life and one who said they would choose, but ultimately left the world prematurely, a result of never having done so.
The therapist rolls his chair side-by-side with Blake’s. He gestures with a flourish at two pieces of artwork on the wall, one by each of the aforementioned family members. Both pieces of artwork are striking in their own right, yet we know the direction each artist’s life went.
“Which will you choose?” he asks Blake, as they both gaze in the direction of the artwork. “Not choosing is a choice not to act.”
“I should choose this one,” Blake answers.
“There’s this thing about ‘shoulds’,” says the therapist. “They make it sound like someone is shouting at you. ‘You should do this!’ Things sound better when we remove the ‘should.’ ”
“I’ll choose this one,” says Blake.
It remains to be seen whether Blake will choose the tough road of living life. It will mean taking on new tasks each week, following through, refining his approach, and feeling a whole lot of discomfort before his feelings of depression may begin to fade just a bit. For this week, he’s agreed to take on a task. He must schedule in an agreed upon amount of time each day for a task he and the therapist have identified as important to him.
I’m doing my best to back off and allow him to follow through. I want to see him leave our home in a year to pursue his career of interest. I’m terribly afraid he won’t. My mom instincts make me want to check up on him, to nudge, to hold him accountable. But, honestly, those are my feelings, and feelings can lie to us. I must also take the difficult road – the uncomfortable one – and let him try this out on his own and be accountable for what he does or does not do. I must continue to find my new way.
This week, as I was thinking about this blog, it occurred to me that something has been missing from my posts for some time. That “thing” is the notion that Obsessive-Compulsive Disorder is treatable; that there is hope for sufferers, their families, and those who care for them. That OCD is treatable was core to my very intentions behind creating this blog – and I fear that, lost in our situation lately, I’ve forgotten to mention this all-important point recently.
Anyone who is new to this blog may not know the history of OCD in our family. They may not have read my initial post in which I explained that our teenage son, Blake, through participation in treatment, had once lived a life where OCD had become a thing of the past. They may not know that I started this blog as a place to give my emotions and thoughts about our experience an outlet, lest I let them flow in front of Blake, who was refusing treatment at the time. They may not know that this blog began with the eternal hope that Blake, given some space, would decide to return to treatment and beat OCD back into oblivion once again.
I want readers to know that the situation we currently face, one in which our now eighteen-year-old frequently barely functions, is not a typical situation for a young man with OCD. I’m not saying that this does not happen when people do not get treatment. It obviously can happen. Blake, however, besides dealing with OCD, got hit by a tremendous bout of Major Depression – and it took us a while to find a professional who thought he could help even though Blake believed he was beyond being helped. Now we are all in treatment again, and we are peeling back the layers little-by-little with the hope that things will get better again. That is what I’ve been documenting lately.
At the same time, it is important for sufferers, or anyone reading this blog, to know that OCD is treatable. I know this as a mother who has been through cognitive behavior therapy/exposure with response prevention (CBT-ERP) with her son and seen amazing results. I know this as a therapist who has the true honor of watching her patients, young and old, show OCD the door and reclaim their lives. I know this as a reader of many blogs and an attendee at many conferences. People can and do get better from OCD. There is every reason to have hope.
If you continue to follow this blog, you will likely observe our family stumble and struggle. That’s just where we are right now. Yet, I continue to have hope that our son will get better once he can see that there is a light at the end of the tunnel. Thus, our journey continues. Thank you for bearing witness.
* To view helpful information about effective OCD treatment, or to see stories about positive outcomes, I’ve listed a few helpful links below:
Just before we leave our latest therapy session, our therapist informs Blake he’s going to use a cliche’. It’s been a difficult few weeks, helping our son tiptoe toward better functioning. First there was getting up each morning at the same time. Next, it was about getting in the shower and getting dressed. Then came the difficult job of convincing Blake to choose an activity for himself – something that would get him out of the house, instead of falling back to sleep for hours upon hours.
In this session, Blake tells the therapist that he plans to apply for a job. It was his task since our last session to decide whether he wishes to take a college class or get a job. Blake names a local store that piques his interest, and then he does an amazing thing – he looks our therapist in his eye and gives him his word. I gasp silently.
“This is a big deal,” I say aloud.
“I know it is,” says our therapist. “Blake doesn’t give his word easily. I know if he does, he will stand by it.”
I admire that the therapist has picked this up about Blake. It’s a subtle thing that the casual observer would miss, but this therapist, with his many years of treating OCD has picked up that Blake’s scrupulosity, his need to tell exact truths, prevents him from promising or giving his word on nearly anything. (If that seems strange to the reader, I’ll sum it up that Blake’s OCD says he must be a good person and always tell the truth. Because there may be an unforeseen circumstance that may prevent him from keeping a promise or his word, Blake’s ritual/habit/compulsion is to not make any promises).
And then, it is quiet.
Our therapist pauses, strokes his chin, and notes that he’s now in an interesting position.
“There are fifteen minutes until our time is up,” he says, glancing at the clock. “So, you could let me know if there’s something you’d like to bring up, Blake. The alternative, which I don’t know if you’d like, is that I could ask your parents if there’s something they’d like to bring up…”
“Nope. There’s nothing I want to talk about,” Blake says, and looks in my direction.
“Oh, I do have something I’d like to bring up,” I say, somewhat too excitedly.
“What?” Blake wonders.
“You know, you have been sitting up late at night talking to me about how much despair you are in, how life seems to hold nothing for you, how awful you feel.” I look to the therapist and continue. “There are frequent nights of sobbing his heart out. And, as mom, I’m trying to listen, but there’s a limit to what I think I can do.”
The therapist nods and what ensues is a dance around whether Blake will share what he’s been going through with the therapist, whether he might trust him with his sadness, and the time constraints. In the end, Blake agrees he will meet with the therapist alone during the next scheduled session and at least answer a few questions for the therapist. But Blake is doubtful that it will be helpful.
“It’s difficult to imagine that there is any hope,” the therapist notes to Blake, and then, as we walk out the door, offers him what he promises will be a cliche’. “It’s always darkest before the dawn,” says our therapist.
Blake sits in his chair looking intently at the therapist. He’s just begun coming with us to sessions and he’s questioning the therapist’s approach (because, well, Blake knows better than the therapist – or mom and dad).
“I don’t understand why my parents are rubbing a tissue on the dogs and putting it on my bedroom floor if I don’t show up for dinner,” he says. “If they wanted me to come to dinner, they just could have told me.”
Well, actually, we did tell him we wanted him to come to dinner. He just wasn’t making it on time most nights.
“But why the tissue?” he wonders.
“Well…” the therapist starts. “Your parents have noticed that there are some behaviors you have that are related to OCD. And they are concerned about them.”
“What?!” His head swivels in our direction. “You’re concerned about them?! Why didn’t you ever just tell me?! Why did you ever let me leave treatment, then?! Frankly, I see nothing wrong with what I do. Dogs are not cleanly and it’s disgusting to have anything from them in my room!”
Well, actually, we did tell him we were concerned about his behaviors and that we encouraged him to be in treatment, but he refused.
As the conversation heightens, the hubby starts to get antsy. He steps into the process.
“Look, I don’t think the primary issue is your OCD right now, Blake. I think your sleep is a huge issue, and your functioning on a day-to-day basis.”
At one point Blake leaves the room in frustration and our therapist looks at the hubby and I.
“Please don’t say it’s not about OCD,” he asks us, “because I’m not so sure it’s not. Blake has a lot of OCD behaviors that he thinks are normal. I don’t want to normalize those and have him think they aren’t a problem.”
When we leave the room, I begin wondering about what our therapist said. Other professionals have pointed to Blake’s depression in recent years, not so much to the OCD. What is he seeing? So, I observe, and I begin to notice what I’ve stopped seeing in the past four years:
Walk into bathroom, wash. Walk out. Walk back in. Wash again.
Open car back door. Seat is too dirty. Sit up front.
“Mom? What is that on the floor?”
“Mom? What is that in the box?”
“Mom? Is that color normal?”
Open car back door. Seat still too dirty. Sit up front.
Say prayer. Pace. Say prayer again.
Carry squirming cat downstairs, while holding said squirming cat as far as arms will extend away from you.
Open car back door. Seat still too dirty. Get a towel and clean seat before sitting.
Blake’s OCD is still very much there. It’s just been quieter. And he’s accepted it as normal (at least he seems to have). How is it connected to his deep, deep depression? That will be an answer we will have to watch unfold.
“Why did you do that? You’ve taken the only thing he had to care about.”
A friend I haven’t seen in a while is trying to convince me that the hubby and I have made an awful mistake by not allowing our son to go off to college in another state this fall. She faces me as we stand at a reception amidst hundreds of people. I feel that feeling in the pit of my stomach – the one that comes when this wasn’t the response I was expecting.
I try to gather myself back together to explain the “why,” but I can’t seem to make any sense to her. I decide to give up trying to explain to my friend the intricacies of our situation.
“Maybe we did make a mistake. I hope not. We made the best decision we could.”
I disappear into the crowd when someone else appears to talk to my friend. I shuffle around, weaving through the others, searching for my hubby. I want to go home. I feel lost and misunderstood.
Making Tough Decisions
My youngest son, Blake, has been struggling with depression for at least two years now. He’s up all night. He sleeps all day. He has little he looks forward to. He also has OCD, which I thought had become a minor issue until we began therapy as a family recently. Blake was accepted this past school year to his first choice college – a small, extremely demanding school without dorms or a meal plan, where he will have to live in an apartment with at least three others and navigate his way to school and around the city.
Although we celebrated his acceptance to the school, the hubby and I were deeply concerned how Blake would go from struggling with his mood and needing constant support to finish high school to functioning in this challenging environment. We spoke with him repeatedly about how important it was to start new habits now, long before he went away, so that he would be ready to function far away from home. He said he wanted to work on it. As a family we implemented schedules, made sure he was reinforced for positive steps, engaged his school’s and his psychiatrist’s assistance, and utilized tools to help with the whole process.
It didn’t work. Things got worse. We asked Blake to get help from a therapist. He balked at this over and over.
“What good will that do? The only person who can help me is me. It’s a self-discipline problem,” Blake told us.
Finally, we had to tell him that we just couldn’t send him to school this fall. We asked him to take a deferment. It was one of the toughest choices we could have made. We wanted him to go. He claimed it was the only thing that he cared about in life. And, yet, his behavior said it was going to be a disaster. Our new family therapist, a veteran in working with extremely tough cases, wondered why we hadn’t made that decision sooner. Why? We didn’t want to break his heart. And, indeed, when we delivered the news, Blake cried for days.
When my friend wandered up to me at the event and wanted to know how Blake was, I just figured she’d understand that we’d looked at every other option before deciding to ask him to wait a year. I figured she’d know the amount of soul searching the hubby and I had to do, and how much courage it took to make the decision and stand firm – and then to stand back and watch our son’s devastation as he refused comfort from us.
Instead, she admonished me for having made that decision.
“You took away the only thing that mattered to him. You should have let him go. He might have surprised you and risen to the occasion.”
Sure. He might have. Don’t you think that the wish that kept us from making the decision sooner was that he would show us he could do it? He’s struggling with mental illness. He can’t force himself to function. If he’d been able to, he would’ve shown us that he could do what was needed when we told him that school next year was on the line. He has work to do first. He has to get healthy.
I know my friend’s advice was well-intended. I know she has my best interests at heart, and Blake’s, too. I also know she had to make a tough decision about sending her own young adult child back to school.
Hearing this unexpected response from my friend has toughened my skin a little bit. It’s made me realize that I have to be firm in the decisions our family makes and recognize that others won’t always understand the in’s and out’s of those decisions. It’s made me recognize how important it is not to judge the decisions others make for their families. And it reminds me the importance of not offering advice unless I’m asked. I love my friend, but her reaction still stings a bit – and it’ll just take time for that to fade. In the meantime, our job is to keep working in therapy and applying what we are learning every day.
Fingers crossed that Blake will be ready to head off to school in Fall of 2018!