It is such a pleasure to be a Guest Blogger this week! I am thrilled to be blogging as the newest member of the DSF Team, proudly serving as the Family Network Support Group Liaison. I’m here to first introduce myself and share a little bit about my family. I’ll close by sharing my experience with Eileen Devine’s Brain First Parenting training, hosted by DSF. The recordings from those three days (each a three-hour session) will be shared during our upcoming virtual Day of Dravet workshops in October.

My husband, Leo, and I live in the Pacific Northwest, just north of Seattle, Washington. We have two amazing children, Leonel (age 7) and Eloise (age 5). Before Dravet syndrome entered our lives, I worked as a speech-language pathologist in both the school and pediatric therapy clinical settings. I am a proud PTA member, serving as one of our elementary school’s Special Education Representatives, and I stay connected with volunteer opportunities within our local Epilepsy Foundation of Washington. Our family enjoys cheering on our Seattle sports teams (particularly the MLS team, Seattle Sounders) and exploring local outdoor activities. In the few but vital free hours that I have, I enjoy listening to audiobooks, adding houseplants to our home, and experimenting with alcohol ink painting. 

Leonel is our child with Dravet syndrome and Eloise is his VIP Super Sister/Sibling. If you are the parent to a child with Dravet syndrome, you are fully aware that Dravet is “more than just seizures”. Leonel is an incredibly loving child with a huge heart; however, not even he is free from challenging behaviors (both at home and at school). Eloise is neurotypical and while Dravet may have spared her genetically, it still impacts her and our daily lives. Eloise is also very loving and inclusive and I commonly refer to her as my “spirited child.” Since both are still quite young, I have spent the last several years learning a variety of parenting techniques and styles and how to handle those “moments.” There never seemed to be a great fit (or fix) for what our family was experiencing with either child. This made even “small behaviors” feel giant. It didn’t seem like anything was working. We needed something new and we needed it to be a better fit for ALL of us.

When I was invited to participate in Eileen Devine’s Brain First Parenting training, I enthusiastically accepted. Eileen presented to our small group for a total of nine hours (across three different days) and I am grateful that families in our Dravet community will have access to those recordings as part of the Day of Dravet workshops this October (or at their own convenience).

Let’s be honest, when it comes to managing challenging behaviors (my children’s or my own), I just want a quick fix and the right answer. We’re all kidding ourselves if we think that an “easy solution” is out there (for anything, really!). Was this training “easy?” Absolutely not. Better than easy, it was eye opening. It was rewarding. It was validating. Subjectively, it has been far more peaceful in this home since completing the training.

During the third session, you are encouraged to take a look at and reflect on your own self. I know, I know, I know… “this was supposed to be about MY CHILD’S behaviors, not mine!” I recently saw a meme that stated: Parenting is hard because your child is reflecting back what you haven’t resolved within yourself. Ouch. And that’s just for good ‘ole “regular” parenting. In our community, we’re parenting neurodiverse children with brain-based differences related to their disabilities. We’re parenting their siblings who are impacted by the needs of their brothers and sisters. Somewhere along the way, many of us forgot to continue parenting ourselves. As I’ve already mentioned, traditional resources for managing those challenging behaviors don’t always work with the 5- and 7-year-olds in this home. Learning more about Brain First Parenting has truly given me permission to take a step back and consider my whole child and my whole self. 

Eileen Devine has her License in Clinical Social Work and is a certified facilitator in the teaching and application of the neurobehavioral model, as developed by FASCETS founder, Diane Malbin. A Neurobehavioral Support Coach for Parents, she has a supportive and comforting teaching style. She provides resources and tools, such as the Functional Neurobehavioral Assessment: Fit and Accommodation (© FASCETS) and Starter Strategies & Accommodations, that are clear and ready to use. She helps you improve your listening and your reactions to your child’s behaviors. She encourages you to “just begin.” I was so impressed by what I learned in nine hours that I continue to refer to the materials from the sessions and review sections of the recordings. I seek out Eileen’s blog and Facebook posts to further my knowledge so that I can continue to learn and apply these techniques in our lives. If you’re able and ready to allow yourself some vulnerability, please register to join us during this year’s Day of Dravet workshops to learn more!