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.