Poet • Educator
Sunday, October 15, 2017
Seattle Children’s Hospital–RC.3.906–River entrance
11am – 2:30 pm
Free
Join me and other parents as we explore how parenting children who live with an ongoing physical or mental health issue affects our lives.
No writing experience necessary. This is an exploration for you.
Angela Berg-Dallara says in her book; The Dark Side of Autism: Struggling to find Peace and Understanding When Life’s Not Full of Rainbows, Unicorns and Blessings, “It feels a little odd to be around people with neuro-typical children. I can’t describe the feeling exactly. The feeling is a combination of envy, jealousy, perplexity and a drop of awkwardness. I hate the way I feel around normal children, so now you can add shame and guilt to my list.”
It’s not just parents of children with autism who feel this way. As parents of children with chronic illnesses, disabilities and / or mental health illness, whether it’s autism, diabetes, cystic fibrosis, cerebral palsy, bipolar disorder or one of the myriad other ongoing mental and physical issues, we have similarities and differences from parents of more typically developing kids.
One common experience for all parents is to fantasize about what their kids will be, or do, as they grow up. But, as parents of atypically developing kids we experience the loss of the dream and need to find a “new normal.” This loss manifests itself in various ways over time and whether we like to admit it, seeing “neuro-typical” children and families can often produce envy, and concomitant feelings of guilt for having those feelings. We are comparing our children to others. In our minds other families, whose children may experience common viruses, or broken bones, have it easier. And some of them do.
Not only do we grieve the loss of the dreams for our children but woven into that dream was one for ourselves as parents and families. As our children grow, and don’t make the milestones others do, of talking, or walking, or making friends, or whose lives will be shortened by their disease or its treatments, we are likely to revisit the grief, anger, and envy, in many different situations over time.
We are also angry and hurt when those with neuro-typical children are insensitive to our needs and realities. We may get past grieving the fact that our child will not play soccer, that we won’t be soccer moms or dads. Then too, we miss the friend who used to make us laugh but who could never sit with us when we were sad. So often, we end up letting go of friendships, and sometimes family member themselves, that we had before our children were born because they just don’t understand, or try to understand, what we live with on a daily basis. We grieve those losses too.
As a mom of an autistic boy I know, says, “I live in the deep end of the pool with other people who have similar life experiences, and I can go to the shallow end when I have to, but I don’t live there.” By which she means, that most of us with atypically developing children end up finding supportive communities of like-minded and similarly experienced families. It is easier and more satisfying. We don’t have to take care of others feelings, those who feel awkward around us because they don’t know what to say or how to include our families in their lives. We can share our feelings of envy, fear and anger and know we will be understood, that while we may feel guilt and shame for those feelings, they are typical feelings.
And even with all these difficult experiences and feelings, as we come to accept or accommodate to our given realities, most of us come to value the differences in our children, the richness they bring, and the awareness of what is really important in our lives.
This quote from The Body Keeps the Score, by Bessel Van Der Kolk, among so many others in this book, jumped out at me. In my work with parents who have a child living with ongoing health issues, I offer readings and writing prompts and opportunities to connect their emotions with new thinking. It has been my work now for several years, to investigate and create writing exercises that do not merely re-stimulate traumatic experiences but help us to both contain, think about our experiences, and move forward in our lives.
It is my contention that parents of children with either acute or chronic health conditions, experience a form of traumatic stress which becomes post-traumatic stress as the years go on. Perhaps our child (and the mother) had a devastating birth experience that left her permanently effected developmentally. Or perhaps it took awhile for the health issue to show up and be diagnosed, during which time we may have not been able to get doctors to take symptoms we observed, seriously. Or perhaps our child simply came down with an obvious but incurable disease and we are coping as best we can with the day to day effects. Whatever the causes, reasons or actual illnesses or disabilities, we parents experience some commonalities. Chief among them is grief, anger, guilt, sometimes depression and /or, despair. Likely our sleep, our eating, our work, family and social lives have also been greatly impacted.
In my new writing groups, parents may be in a supportive community for the first time. They often need to “tell their story” to some extent. I try to keep this aspect both possible and limited. As I have come to understand, and as Van Der Kolk says, telling the story doesn’t usually change how we physically experience the trauma. (Van Der Kolk’s subjects are those who have experienced direct trauma through abuse, violence, war or deprivation of some sort. Yet, I believe many of his assertions apply equally to parents of children with ongoing health issues.)
How does writing change our brain chemistry and bodily responses? How and what we write is what I think is most important. The structure(s) of the group provide a holding environment from which we can begin to acknowledge our realities and explore new options. From the moment people walk in they will see tables and chairs in a circular or rectangular arrangement. There will be a couple of boxes of Kleenex on the tables and a separate table with snacks. I start each session letting everyone know, that I know there is a range of what we are all dealing with and that I believe we have commonalities and wisdom to share with each other. Before going around the room I ask everyone to sit, close their eyes and take a breathing “inventory” of how they are feeling, and what they are aware of in this moment.
I ask them to think of 3 words or images that might capture those experiences. I also ask them to think about their hopes and fears for this workshop. (It is important to limit their hopes and fears to this workshop time…it is too easy to worry about the future and agonize over the past. I want to bring people to this moment as best I can.) After a few minutes of inner contemplation I suggest they write their 3 words and hopes and fears. Later on, they will have a chance to share those if they choose. But they can also choose not to.
Then we go around the group and I ask for their names, their child’s name and age and just a little about what illness or disability they have. I try to limit them to 5 minutes. Sometimes, it is clear that people really need to share more and I gently suggest that we will have more time for sharing as the workshop progresses.
I will say more about the specifics of what kinds of readings and writing prompts I offer in another blog post. What I want folks to take away from these ideas so far, is how to provide a holding environment, a container, for the work to come. Building trust between me and the participants is important and I think having a clear structure is one of the building blocks of trust. The actual readings and writing prompts and how I structure the sharing moments and ask deepening questions are also part of the “holding.”
Recently, I re-read an article that Catherine St. Louis wrote in The New York Times in 2014. She presented research about coping techniques for parent caregivers of children with chronic health needs. This paragraph stood out for me.
“All parents endure stress, but studies show that parents of children with developmental disabilities, like autism, experience depression and anxiety far more often. Struggling to obtain crucial support services, the financial strain of paying for various therapies, the relentless worry over everything from wandering to the future — all of it can be overwhelming.”
The research focused on two coping approaches. “The first group practiced meditation, breathing exercises, and qigong practices to hone mental focus. The second received instructions on curbing negative thoughts, practicing gratitude and reclaiming an aspect of adult life. Both groups were led by specially trained mentors, themselves the parents of special-needs children.”
Not surprisingly, both groups reported reductions in stress and anxiety and even “how to redirect their anxiety into positive action.” The group given the meditation techniques seemed to report greater reductions in anxiety.
When my child was diagnosed with an autoimmune disorder I also experienced high levels of stress, anxiety, sleep deprivation and fear. It was then that I refocused my writing journey to include all of what was happening in my life. I found great relief and new wells of creative energy. I became a better advocate for my daughter too.
I have had similar reports from parents in my Writing as a Righting Journey workshop where we use writing and body awareness to help reduce anxiety and find ways to channel it into creative, and more productive thinking and action.
Next week I’ll be presenting my work at an international health humanities workshop in Spain and in November, I’ll share some insights of my work at a Mayo Clinic conference in Phoenix, Humanities in Medicine. Stay tuned.