Parenting a Baby with a TBI: Advocacy, Grief, and the Energy of Peer Assist
At the age of fourteen, Karen Kaizuka’s son suffered a sports-related traumatic brain injury (TBI) that required emergency surgery. The long journey of raising a child with TBI began when they learned to walk and speak again.
In this episode of Brain Injury Today, Karen speaks with Deborah Crawley, Executive Director of BIAWA, about the unique process parents are going through and how their health care work and involvement with the Washington Traumatic Brain Injury Council supports their work to improve systems support for Brain Injury Survivors and Their Families.
Karen already had experience as a parenting attorney. Her younger son had previously been diagnosed with autism, so Karen was already addressing special needs and the necessary support for her son. Most importantly, as a parent, she had already gone through a process of grieving because her son would not be who they thought he was or had the potential they wanted for him.
This previous “experience” helped her to do better for her injured son at the moment. This also enabled her to get what her son needed so that he could be the best version of himself.
As she grew up, Karen was exposed to her mother’s work as a special education teacher and the effects of inclusion. This helped Karen testify of genuine intercession – and be an advocate for her son. She was able to sift things through and focus on what was most important during her son’s injury and journey.
Karen believes in peer mentoring – being able to speak to someone who’s been walking in the same shoes. This is what a mother did for her when her son was in the hospital. That gave her hope.
Karen remembers the discharge interview from the hospital. “He achieved all of his goals, we’ve done everything we can, and we’ll be referring to occupational therapy, physiotherapy, and speech.” Although they had received exceptional care and support up to this point, she felt like they were being discharged into an unknown void without any support. She hopes to improve systems support processes so that other parents don’t hear the same thing as her.
Listen as Karen talks about her family’s journey, the impact of peer support, and advocacy learned on the podcast above.
ResoParenting a child with TBI sources
HeadStrong, WA TBI Council, Brain Injury Alliance of Washington