#RELATIONSHIPS

A Dravet Diagnosis: From Devastation to Transformation

My Journey Partnering and Parenting

Ashley Wood
LCSW, CEAP
Ashley Wood is a licensed clinical social worker, an AEDP certified therapist, and a contributor, collaborator, and co-author with The LAB Method.* Founded in 2013, The LAB Method is an evolving model and approach for anyone wanting more healthy relationships. The LAB Method provides tools that help families to accelerate positive change in ordinary, sticky parenting moments. Ashley lives in Marin County, CA, with her husband and 3 children—a son, Owen, age 12, and twin (fraternal) girls, Mimi and Piper, age 10. Piper has Dravet syndrome.

3 kidsI could not have written a more “perfect” tapestry of life experiences to prepare me for my life today. When I really sink into this idea, I smile. This doesn’t mean that life is easy. I have my days, my moments when I feel overwhelmed, scared, confused, sad, angry, grief stricken, lonely, or sorry for myself. Thankfully, though, these feelings come and go and I return to a more steady, hopeful, and energetic state of being.

My name is Ashley Wood, and I am 46 years old. I have been married to my husband for 15 years and together for 17. We have 3 children, our son, Owen, age 12, and our twin (fraternal) girls, Mimi and Piper, age 9. Piper has Dravet syndrome, a severe and intractable form of childhood epilepsy.

Piper had a complex partial seizure at 4 months of age. I didn’t know what it was then, but I knew something happened in her left arm for a few seconds. I registered the moment and even talked with her pediatrician about it but we were more focused on her ear infection and helping her get some antibiotics. 

Fast forward 2 months, and Piper has a grand mal seizure that lasts over an hour. The
5 of us were on a tiny island in the Bahamas. The medical care was primitive and simple. Fortunately, the doctor on call had enough experience to know how to work on stopping the seizure. Once the seizure stopped and Piper was stable, we were airlifted off the island and transported to a larger hospital in Nassau. This was my beginning into the world of epilepsy. This was also the beginning of being overwhelmed and in a state of fear, panic, and grief.

“Once the seizure stopped and Piper was stable, we were airlifted off the island and transported to a larger hospital in Nassau. This was my beginning into the world of epilepsy. This was also the beginning of being overwhelmed and in a state of fear, panic, and grief.”

While I was in these early years adjusting to Piper’s life with epilepsy, I spent a lot of time crying and being grief stricken that the healthy daughter I thought I had was, in fact, facing serious medical issues and down the road, developmental delays. These feelings came out in my interactions with friends, family, my husband, and in my work community.

“While I was in these early years adjusting to Piper’s life with epilepsy, I spent a lot of time crying and grief stricken that the healthy daughter I thought I had was, in fact, facing serious medical issues and down the road, developmental delays.”

When I was with my 3 children, my defenses kicked in and I went on autopilot. Of course, I was going to shield them from my big emotions, but now I see that so much energy was put into pretending to be “fine,” that I grew increasingly detached from them and myself. A part of me knew I was really struggling emotionally and another familiar, deeply wired part of me took over and mastered the face and daily routine of moving/doing and presenting “ok.” I was so good at this, I think I even tricked myself. 

mom and daugtherOne of the areas of my life I remained involved with in my early adjustment to parenting a child with epilepsy was my work. I had a thriving private practice as a psychotherapist and when I was pregnant with the twins, I was introduced to a modality of therapy that grabbed my heart and intellect. It is called Accelerated Experiential Dynamic Psychotherapy (AEDP). I immersed myself in the study and practice of this type of therapy and 7 years later became a certified AEDP therapist.  

Along the way, I met a colleague and now dear friend Polly Ely. She too was immersed in learning AEDP. A few years into our relationship, she invited me to join her as suitemate in private practice. Sharing a space in private practice has given me the privilege to work alongside Polly and witness her creation of The LAB Method. The LAB Method is a program that creates tools to help humans grow closer and wiser.

As Polly was in the early years of developing her method, I was arriving at a new phase of parenting that I found hard and draining. My son was 7 years old and the twins were 4 ½. Two experiences stand out. The first one was around evening bath time. I remember all 3 in the bath and some issues developed around ending bath time. None of them were listening and a surge of anger arose in me and before I knew it, out came a harsh, scary tone. I felt awful and remember going to bed with this feeling.

A second scenario that stands out was when my 7-year-old son packed a knife in his
backpack he brought to the town picnic in case he needed protection. He was showing the knife to some friends by the boy’s bathroom, and a police officer happened to walk by. The officer noticed that my son had a knife. I was horrified, embarrassed, and angry. Sadly, I was so focused on my own feelings, I missed how embarrassed and scared my son was. When I shared this event with my colleague, Polly, she listened kindly and gently shared that she wasn’t sure that my decision to take away technology indefinitely was going to teach my son very much. I remember leaving this conversation a bit puzzled.

Soon after these two events, Polly shared that she was going to host a casual gathering for parents to come together to learn some practical tools and language to help them get through some of the common sticky moments she was repeatedly hearing about from the families she was working with in private practice. 

I jumped at the opportunity to attend Polly’s first LAB for parents, and as I sat in the audience in disguise to learn as a therapist (because the perfectionist in me was not comfortable with being the not-knowing parent), I humbly and quickly began to face that I was missing some really important information as a parent and therapist. Tears welled up in my eyes several times as I began to apply the ingredients of healthy attachment in my home and realized I was missing the essential ingredient—repair. I knew something about attunement and I knew lots about rupture and I had no experience with repair! Yikes! And a relief began to show up inside me.

“In my early adjustment to epilepsy,
I was so preoccupied by my feelings, I lost connection with my children and their feelings.”

You see, modern parenting is hard enough, particularly with the types of parents I had— avoidant and authoritarian. Throw epilepsy in the mix and I call it being challenged on steroids. What I have come to face is that in my early adjustment to epilepsy, I was so preoccupied by my feelings, I lost connection with my children and their feelings. Mini relational ruptures were happening often and I didn’t even realize it. While it was and continues to be painful to remember these ruptures with each child (and my husband), The LAB Method and all that I have learned provides a framework to transform and heal these painful memories and experiences. I have also come to learn and teach that all of us are rupturing with our kids. It is a part of human development and healthy relating, provided we add the ingredient repair.

Fast forward to now, and I feel a deep gratitude to the growth and development of The LAB Method guide to parenting and partnering. I am a LAB Method specialist, writer/collaborator, and producer of tools and materials. I teach The LAB method in my private practice setting and run study groups for individuals who have attended a LAB and want to deepen their knowledge of the method.

“Everything about epilepsy is unpredictable, but what it can’t take away is my energy and devotion to raising securely attached children and being the best version of myself in my partnering.”

Last and most important, I live and model this method with my children and partner. I no longer dread aspects of parenting but rather look forward to each stage of development. When I get stuck, it is not for long. When my children are being just as they are supposed to be, I no longer fear their mistakes but welcome them as a natural part of their learning. Everything about epilepsy is unpredictable, but what it can’t take away is my energy and devotion to raising securely attached children and being the best version of myself in my partnering.

COMING SOON: More articles exploring this topic, including “The LAB Method—A Practical Guide to Parenting”

The views and opinions expressed in articles on this site are those of their respective authors and do not necessarily reflect the views of Greenwich Biosciences or any of its affiliates. The authors of these articles have experience in the topics they are writing about. Although the advice, tips, ideas, approaches, or resources mentioned in these articles worked for their respective authors, they are not necessarily endorsed by Greenwich Biosciences, and may not be appropriate for you. Talk to your/your child’s doctor before making changes to any treatment plan.

*The LAB Method is the sole property of Polly Ely, MFT.