“Grief is like surfing. Sometimes you feel steady and you’re able to ride the waves, and other times the surf comes crashing down on you, pushing you so far underwater that you’re sure you’ll drown.”
- Brené Brown, Rising Strong
A few months ago, I facilitated a workshop focused on reducing relational stress and building resiliency for families of children with special healthcare needs. In the discussion with participants, most of them parents and caregivers, we devoted a portion of our time to becoming comfortable with the uncomfortable— talking about grief and what it means for our unique parenting experience.
In her book, Rising Strong, the noted researcher and author, Dr. Brené Brown, defines grief as having three foundational elements:
The loss of what could have been, but never will.
Longing for what will not be, and for meaning and understanding of what is.
And feeling lost— always feeling the need to reorient ourselves to our world, to our emotional selves.
Dr. Brown suggests that grief is perhaps the emotion we fear most, because of the darkness it brings. It is simply easier— and more comfortable— to be angry than sad.
Grief is often an exceptionally personal process, yet at the same time, society dictates general rules around that process. When we lose someone, often through death, it is understood that we will likely have periods of tearfulness and feelings of depression, that we may need to take a temporary leave of absence from work, that we may not “be ourselves.” Close friends and family, and even acquaintances, will offer condolences in the way of meals, cards, flowers, offering to babysit our kids or to cover for us at work. We may grieve in our own way, and in our own time, but it is universally accepted and acknowledged that we have the right to grieve the loss we’ve experienced and that we likely need some level of support to help get us through.
But what happens when you experience a significant loss, and it is not recognized by even your closest friends and family, let alone understood? How do you work through it when you don’t feel that you have the permission to be grieving in the first place?
That is the unique (and sometimes more complicated) grief of a parent caring for a child with special needs.
This type of grief is sometimes called disenfranchised grief.
Disenfranchised grief: loss that is not socially sanctioned, openly acknowledged or recognized by others, and is not publicly mourned.
If you delve into the research on disenfranchised grief, one of the specific populations identified as experiencing high-levels of disenfranchised grief are parents of children with disabilities. When I reflected on my own experience, and the experiences of many families I’ve worked with, this information resonated instantly.
Every family has, at one time or another in our work together, articulated specific instances or periods of time that were filled with intense grief because of what they came to realize, through their parenting experience, is lost or will never be, compounded by the loneliness felt when those around them were completely unaware of this intense and personal experience.
The disenfranchised grief of a special-needs parent has many facets.
It can be the letting go and loss of the idea that our child will someday grow into our idea of an “independent adult.”
It is the sadness that overtakes us when faced with the reality that social gatherings and family vacations will never be “easy.”
The realization that she simply won’t have the typical friendships most kids her age experience.
It’s the grief that creeps up when you come to realize he’s never been invited to a birthday party or even a playdate, and maybe never will.
Disenfranchised grief is the feeling of loss when developmental stages or common milestones in a typical child’s life, such as graduation from high school, pass our children by.
It most certainly can involve longing for a future for yourself that may never be, one that has you enjoying a retirement that no longer requires direct and personal care for another.
It is the loss of friendships due to the reality that some people, no matter how hard they try, simply can’t reach a place of understanding and full-acceptance.
And it’s the diminished social life that accompanies this.
When a loved one passes away, the intensity of this grief certainly remains, but it often fades with time. The feelings of loss, depression, sadness may flare up at times when we are reminded that our loved one is no longer with us, such as birthdays, anniversaries and special holidays. Those around us acknowledge this and expect this of us. It can often be a time of healing when we have that experience validated, surrounded by support and love of others.
With the disenfranchised grief of a special needs parent, there may be a similar waning of difficult emotions, such as anger and resentment that is slowly, over time, replaced by acceptance. And, like the anniversary of the death of a loved one, these difficult feelings can still flare up or even engulf us at different points in our parenting. The difference is that this unique grief of the special needs parent is typically not recognized in the same way, leaving a feeling of isolation and deepened sadness in its wake instead of an opportunity for further healing.
The manifestations of our grief can be physical, emotional, cognitive, behavioral, and spiritual. It is a unique experience for each person—even those experiencing the same loss— making shared grief (say, between two individuals in a parenting partnership) tricky to navigate for many.
But recognizing it, having words to articulate and describe it, and working through it are essential to our well-being.
“The opposite of recognizing we’re feeling something is to deny emotions. When we disengage from tough emotions, they don’t go away; instead they own us, they define us.”
- Brené Brown, Rising Strong
The harder it is for us to articulate our experience of grief, the more disconnected and alone we feel at a time where one could argue we are in the most need of connection and support. Caregiver burnout and stress increases, we yell or retreat more, we turn to unhealthy—often numbing— coping mechanisms to deal with the emotional pain.
So, what can we do differently in order to recognize the grief we may be experiencing as a parent and begin to work through it?
1. Acknowledge for yourself that your loss and longing as a parent of a child with special needs is no less valid than a loss which is socially sanctioned and recognized. Mourning that loss does not make you a bad or selfish parent, it makes you human. You can have intense love for your child and also allow yourself to grieve.
2. Give yourself permission to recognize the grief process you are going through and give yourself the space to process it in a healthy, productive way.
3. Remind yourself that you are not alone in your experience. Find a supportive group of people who have similar experiences (either on-line or in-person). It is easy to fall into a pattern of isolation when you truly believe you are the only one struggling with this unique loss.
4. Seek out personal ways to get up close and personal with your grief and emotions. Some people find that meditation, journaling, art, or other creative expressions of self are incredibly helpful in getting in touch with what they are feeling. Making the space to allow for curiosity and exploration about what you are experiencing is key.
5. Find professional support so that you can begin to engage with the tough emotions, wade through them, and emerge on the other side with a greater sense of peace. This might be accomplished through attending a professionally-facilitated support group or seeking out individual counseling with a therapist experienced in working with parents of children with special needs.
Grappling with grief may indeed feel like surfing at times, right up to the point of feeling like you're drowning, but in the process of acknowledging that grief and moving through it in healthy, supported ways, we can learn to navigate even the roughest seas.
Eileen Devine, LCSW is a coach and consultant for families all over the world impacted by neurobehavioral conditions. She is also the founder of The Resilience Room, a close-knit membership community for parents of kids with neurobehavioral conditions. She lives with her husband and two amazing kids, one of whom happens to live with FAS. For more information, visit eileendevine.com.