Animals grieve too.

I was recently struck by a post in the New Yorker: an interview between the neurologist Oliver Sacks and Temple Grandin, a professor of animal science and animal behaviorist (who is also autistic). Grandin, at one point in the interview, describes for Sacks why the cows at a particular farm are "bellowing"; she deduces that it's because the mother cows were separated from their calves that morning:

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"'They must have separated the calves from the cows this morning,' Temple said. 'That's one sad, unhappy, upset cow. She wants her baby. Bellowing for it, hunting for it. She'll forget for a while, then start again. It's like grieving, mourning-- not much written about it. People don't like to allow them thoughts or feelings.'"

As a NICU mom, the image in my mind of a mother feeling bereft in being separated from their baby couldn't help but drum up images of the morning I was discharged from the hospital, leaving my tiny boys behind. The grief of the NICU is tangible for parents, even when you haven't lost your child. Loss is loss (I wrote an article about NICU grief for Hand to Hold that you can read here). Grief is real. And unfortunately, our culture doesn't have a lot of practices within it to guide us through the pain. Perhaps even more striking is that in the recently released DSM V, the definition of "normative" grief has been relegated to a mere two weeks, suggesting that anyone who feels their loss for longer than two weeks to cope with the additional notion and stigma that they are clinically "depressed", in need of medication, or "different" from the "healthy" individuals who were able to "get over" their loss in a more timely manner. They even developed a clever title for it: Prolonged Grief Disorder (as if the bereaved or those coping with loss didn't have enough to shoulder-- now their grief is considered "disordered"). 

Anthropologist Barbara J. King described the mourning practices in animals of different species in a 2013 Scientific American article titled "When Animals Mourn" (she also published a book on the subject). It seems since Grandin made her statement about the lack of research into animal mourning practices, more scientists have looked into it.

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In a culture saturated with behavioral theories about why and how people feel, oftentimes based on over-simplified notions of the way our brains work, it's only recently that we've started to realize the importance of the limbic, emotional system of the brain not only in our own functioning, but in that of the vertebrates around us. King theorized that perhaps the function of mourning is intrinsically tied to the amount of love and attachment we felt for the individual or (in the case of NICU parents) the ideas about or hopes for the future that we lost. "What is adaptive, then, may not be grief itself but instead the strong positive emotions experienced before grief comes into the picture, shared between two or more living animals whose level of cooperation in nurturing or resource-acquisition tasks is enhanced by these feelings," she wrote, suggesting that perhaps love, happiness and attachment benefit our survival so enormously that it's important to grieve in order to move forward, to acknowledge the importance of what was lost, and to thrive.  

Why is it important to know that animals grieve too? 

Because in the face of a world that sometimes pathologizes grief, it's important to know, and to embrace, the idea that grief is a normative experience. Instead of being silenced in our grief, it's important for us to speak to it, and to connect with others who may be going through similar pain. It's important for us to overturn the idea that experiencing crisis and coping with it does not make us "mentally ill" or different from others, but rather opens our world to an experience that is incredibly difficult and challenging to navigate. In Western Culture, many of the historic rituals around death have been deconstructed or done away with, perhaps with the hope of keeping the fear of death, loss or grief at bay. With the knowledge that we as a species aren't alone in our grief, maybe we can reconstruct ways of talking about, honoring and integrating our grief, accepting it on a level that doesn't make it taboo, but rather, creates the possibility through which experienced individuals may be able to provide guidance for people just beginning their journey through loss. 

Is Growth Possible after Trauma?

My new post at Preemie Babies 101 went up today; it talks about the sometimes unexpected changes that can occur after having gone through NICU trauma. Check it out: 

"...After the NICU, as we assessed what still stood around us, what hadn’t changed dramatically or crumbled in our lives, I wondered how the experience would affect my story, our story, the story of our family. Did this trauma mean that we would become a sad story? Our lives a tragedy? Would our lives forever be shifted into the shadow of grief?

The answer, unexpectedly, was no."

To read more, click here. 

What the World of Psychology Can Learn From the NICU Parent Support Community

My career as a marriage and family therapist has by far and large consisted of work within nonprofit residential placements. Beginning at a residential high school for teen moms and their babies, through a placement for women transitioning from the prison system and being reunited with their children, to a setting for homeless teens working towards their independence, each site had their own challenges, rife with the notion that each individual who stayed there would eventually be on their own. How could we, as service providers (and in most cases a short amount of time), help our clients get to a space of capability that they would no longer need our interventions, our support?

As I learned more about what worked for my clients, and saw what inspired them, I realized that the power of their connection with each other had far more longevity than what my teams and I could reasonably provide as therapists. By the time I worked with the homeless teens, I (and my incredible team) understood that by giving our clients power over their own outcomes, and providing them with a contained space in which they could learn about setting boundaries, coming up with solutions, and attending to their problems together, that the community that they built would be far more long-lasting and empowering than anything I could look up in the DSM and diagnose them with.

Given the current state of the APA and the horrific acts that have allegedly occurred (in addition to a few adjustments in the DSM-V), I feel now more than ever that community-building, empowerment and diversity are the most efficient ways to help individuals who may be struggling with the events of their lives. In community, we can work out solutions by ruminating together, problem-solving, and using creativity to shift the way we think about the different things affecting us, changing even the very language we use to describe ourselves, our families and our stories.

Fast-forward to my new life.  One of my most frustrating memories of my sons' hospitalizations was of the PICU when Elliott was close to discharge, but not quite there. It felt like years that we spent waiting for him to coordinate the suck-swallow-breathe reflex and learn how to eat on his own. I distinctly felt as if he was in a residential placement. There were similarities: we didn't choose to be there, nothing we had done had prompted it, and we had to answer to an authority for even some of the most basic of our connection with our son. We also struggled with the stress and pain that almost three months in the NICU had prompted, had a hard time knowing what to do that would help us get out of the circumstance, were triggered by things that reminded us of where we were. It felt like we were children, who had no expertise over our own baby and who had no power to change our outcome. 

After the NICU, I knew that there would be nothing to which I could professionally dedicate myself towards more than the cause of the challenges faced by NICU parents. I researched, I thought about it, and I came up with as many ideas as I could to try and reach and help the NICU parent community.

And then, I launched NICU Healing.

As I stepped into this new world, a world about which I felt unquestionably passionate, I realized immediately that I was in good company. I started to meet other service providers, doing similar things but oftentimes in different ways. I realized that many people who had gone through the horror of being faced with the mortality of their infants or, for nurses, their charges, had had the same realization that I did: that there was no going back, that helping others in similar circumstances not only created a path towards healing others, but also healing ourselves. It was incredible to see, and to feel part of this powerful community. Meeting other providers was by far the most stunning component of launching my website.

The NICU support world focuses on creating a community of equals. Although each one of us can offer different aspects of expertise, there are no "experts" prescribing what families need, or speaking from behind the curtain a la Wizard of Oz. People aren't ostracized if it takes "too long" to go through a specific aspect of their grief. They aren't stigmatized. They are listened to. They are understood. They are given contact with others who have faced something similar that may have wisdom essentially helpful to that specific circumstance. We share our stories, problem-solve together. Come up with ways of changing the system when it isn't working for our community. This world of parents, nurses, counselors, service-care providers, peer support experts, authors, has such diversity, that an individual or family that finds themselves lost in the NICU experience has a plethora of resources from which to pull: if one approach doesn't "fit", there are many others to choose from. Because both parents and nurses have experienced the trauma of the NICU themselves, there is an innate empathy and compassion for others' circumstances, an empathy that perhaps can't be manifested without that very personal understanding? 

Perhaps the world of psychology could benefit from adapting some of these more person-centered, empowerment-focused approaches to working with individuals struggling in their lives. Perhaps, instead of looking for ways of becoming the "expert" on other people's pain, service-care providers can instead focus on being able to "be" with their clients, to be truly aligned with them, to help clients to recognize their innate strengths and move forward with dignity and strength. Maybe, the notion of being "other", or different, doesn't serve our clients very well, and instead recognizing that we are all in fact a part of the human community and all of us have some experience of suffering can be that much more inclusive and change-inspiring. Maybe there isn't anything "sick" about needing help when facing difficult times. 

Learning the Language of Grief: Telling Your Twinless Twin About Their Twin

My new piece about grief posted at Hand to Hold today: 

"When you become a parent, you don’t expect that one of the lessons you’ll have to impart is that of how to grieve. Even though you know that your child will have their own pains, their own struggles, their own sense of groundlessness at times as they grow, it’s your hope that at least there will be a break, a reprieve, a pause before they have to learn how to navigate something so utterly difficult, a time where they can bask in unconditional love without the notion of pain. But sometimes that’s not the case."

To read more, click here. 

Navigating the Challenge of Trauma in Relationships: Partnerships in the NICU

"He's avoiding visiting the hospital", "he's shut down emotionally", "she seems so fragile, I don't want to burden her with any more stress", "she's hyper-paranoid about the baby, and won't let me take him/her around my family or friends even though I feel it's safe now", "it feels like he/she ignores me now that the baby is finally home", "we don't talk about the things we used to care about any more", "our relationship is uncomfortably different". 

All of these are quotes from parents with whom I've spoken about their babies' stays in the NICU. In fact, in conducting my initial research in creating NICU Healing and leading support groups, what I found most parents felt they needed was guidance in how to salvage their relationship from a circumstance that had brought enormous stress upon it. Marriage is a challenging and dynamic relationship-- ever-changing-- and the NICU, along with the stress that it brings, can throw what might be an already fragile partnership into a tailspin. 

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Studies have shown that the evidence of both depression and PTSD amongst NICU parents are almost equal between mothers and fathers, and occur at staggering rates of over 20%. However, the way that these challenges present themselves between the opposite sexes can be vastly different. Women tend to exhibit symptoms of traumatic stress during the initial weeks in the hospital, whilst men oftentimes don't show symptoms until well after the baby has been discharged home. While there are various theories regarding why this is so, research is showing that different ways of coping can have a profound effect on partnerships. Common knowledge has it that the divorce rate amongst NICU parents and especially of parents of children with special needs is very high. The challenge of facing this incredible trauma can prove to be overwhelming for relationships, and can result in further tragedy to an already difficult circumstance. 

What can you do? 

It's important to be aware that partnership issues while going through a highly stressful life event are common. Even though you may not know any other families personally who are going through the same things as you and your partner, try to remember that relationship challenges during and after the NICU are incredibly common, even long after discharge. You are not alone.

As such, reaching out for support from other parents can be really useful. Online support groups for both moms and dads can open up a world of understanding, particular to each of your own individual experiences. It's important to know that others in the same circumstance struggle with similar things, and that you're not an island. Others who have been through similar things can give suggestions about how to reconnect with each other, and be a shoulder to cry on when it seems your partner, in that moment, just can't.

Additionally, making a space for each partner to speak to their experience is crucial in facilitating healing for both members of the parent structure. Hence, if you feel that your partner hasn't had a chance to express his/her struggles with their experience, try to actively make a space for that. Ask questions, be curious. Although it's challenging with a baby in the hospital or, in the months thereafter, raising a medically-fragile infant, try to be mindful of making time to speak with each other, one on one, at least once a week. Sometimes that can look like chatting with each other before going to sleep at night, going on a walk with the baby where cell phone use is minimized, even working out a time when you can have a date night or a lunch alone (once you have trusted caregivers that can provide childcare). The trauma of going through the NICU oftentimes has the effect of changing an individual's perspective on life drastically, so in a sense, making this space for conversation is essentially making a space to get to know your partner in this new context, and developing understandings that will help you to be better able to support them when they are struggling. 

Another tip that can be useful for partners is to try and identify the parenting strengths of each other, rather than allowing alienation to set in when one partner has a hard time doing something specific. Although it's not always the case, it's sometimes challenging for fathers to witness their child on life support in the NICU. Some case studies have shown that fathers can feel as though they are "out of control" or "no help" while their baby is hospitalized (keep in mind this gender role can easily be reversed as well). They can feel like their efforts would best be spent going to work and/or supporting the mother, as opposed to participating in the daily rituals in the hospital like diaper changing, skin-to-skin, etc. Many dads (and oftentimes moms too!) report feeling scared of hurting their fragile charges, and need to be comforted/guided through the experience of providing cares for their child (especially first-time parents). Even though this circumstance can sometimes be baffling for a partner, should you find yourself within it, try not to let what might seem like avoidance cause damage to your relationship, and try to foster empathy. Encourage them. Stand beside them. All things considered, it is an incredible strength to be able to do what you can do when you're in the NICU and beyond, and giving your partner the understanding and empathy that you can see they are trying is a great way of establishing trust and acknowledging each other's strengths.

Finally, when things seem like they've gotten to a point at which it's difficult to imagine how to re-calibrate with your partner, don't be afraid to reach out for help. Our culture is often saturated with the expectation that couples should be able to thrive within even the most challenging of circumstances. Reaching out to a trusted professional can be a valuable way of making a space for healing together, and being able to witness each other get through this struggle. Grief is a common emotion associated with the NICU, and it doesn't only affect one member of a parenting partnership, it affects both. Finding support to guide you through this process, particularly together, can be invaluable in building a structure of teamwork that you may be able to revisit throughout your relationship.

 

The Silent Struggle: Mental Health and the NICU

In becoming parents, we oftentimes accept the silent assumptions that are made by our culture of what that's supposed to look like. An "ideal" parent, for example, seems to live in a blissful state of sacrifice, made happy by the sheer existence of their child, doing their best to take on their responsibilities according to whatever parenting technique may be in vogue at the time (see the book "Our Babies, Ourselves: How Biology and Culture Shape the Way We Parent" for some great writing on this subject).

Cracks in our ability to do that, made visible in mixed company or in the necessary public outings we sometimes have to make, can be harshly judged by strangers and other parents alike, as if our take on parenting is expected to be at top notch regardless of our surroundings or the context. Paradoxically, depending on your audience, different values will be upheld, and surprisingly, people oftentimes feel little need to censor their comments. 

The NICU parent, by virtue of their baby's traumatic entrance to the world, has a unique set of expectations placed upon them, in addition to a unique set of stresses. I remember when my son had terrible colic symptoms after discharge, which caused him to cry for numerous hours a day every day for months, of feeling like I wasn't grateful enough to have him home, that I was taking his health for granted, that I shouldn't feel depressed or anxious because, after all, he was out of the NICU. What else could possibly be as serious as that?  The depression, the haunting memories of the NICU that often flared up over the course of his entire first year-- how could I let those things overshadow the fact that he survived, that he was with me, that at any moment I could hug him? The fact that we were on quarantine to prevent infection, keeping us away from any kind of meetup groups or any kind of regular support from other parents didn't help matters much.  The guilt and shame that had accompanied his NICU stay carried on throughout his first year, in the form of my own expectation for myself that I should be happy and grateful, that struggles with emotional challenges were selfish or pointless. 

The NICU parent has to contend with the very real effects of trauma long after the discharge paperwork for their baby is signed. It's suspected that a staggering number, between 21-23%, of NICU parents have symptoms of PTSD. It's been found that amongst NICU dads, late-onset PTSD is common, cropping up sometimes as long as 6 months after the baby is home from the hospital (as a result, PTSD amongst NICU dads is underreported and difficult to measure). For moms and dads, untreated emotional trauma can wreak havoc on their ability to connect with their child or with each other well into the first few years of their child's life, and sometimes beyond. The very harsh experience of witnessing your child fight for their life can have profound influence on one's emotional health, and too often, no space is made for parents to grieve the experience, to put a name to what they lost, and to integrate that into their lives. Compounding that experience is the fact that NICU parents also have to deal with the very real threat that their child may have disabilities or health issues related to their prematurity or the medical issues that led to their NICU stay. 

As such, the NICU parent is not only held up to the expectation to be blissfully happy with their circumstances (sometimes, as it was in my case, by themselves), but they're contending with very serious, very real issues due to the fact that they were faced with an unpredictable, challenging, and in some ways emotionally devastating circumstance. With an implicit cultural assumption that parenting should be a joyous thing, too often we are silenced, and prevented from speaking to the struggles we may be contending with privately, afraid of the dark shadow that something like "mental health" might cast over our experiences. 

In resisting this silence, it becomes evident how powerful it can be for NICU parents (and parents in general!) to speak to the struggles they've had in parenting after discharge, to give a voice for others who may be too frightened to express it. In honor of Mental Health Awareness week, I'd like to make this a safe space to share your struggles as a parent, where you've gotten to with it, and if there has been any thing that's given you reprieve. Have you connected with other parents yet? How have you healed from your NICU experience? How would you like to see things change for others struggling with the same thing?