Indeed, the long-term challenges are daunting. The stress, usually the parents, is enormous and relentless. Family caregivers, according to the site Caregiver.org, are at increased risk for depression and substance abuse. They’re also more likely to have chronic illnesses.
Part of the problem, says parent and TBI advocate Karen Kaizuka, is that the support in a hospital setting disappears upon release. When her 14 year old son suffered a sports related TBI 10 years ago, she was left to navigate an often mysterious system. And while she was fortunate enough to have experience with the healthcare labyrinth (her other son is autistic), it was still challenging.
“We are lucky to live in a place with incredible access to trauma services,” Kaizuka explained in a recent Brain Injury Today podcast. Thanks to tenacity, time, and resources, her son had a good outcome. “It was a long journey, but he was able to graduate from high school and even go to college.”
The Hospital Is Just the Beginning
Deborah Crawley, Executive Director of the Brain Injury Alliance of Washington (BIAWA) terms the initial post-TBI hospital stay as “the cocoon.” While your child is inside that cocoon, all their immediate needs are met, all the specialists are present. It’s upon release that the real—and often exhausting—work begins.
Kaizuka comments that, unless you work in the healthcare and rehabilitation field like she does, it’s difficult to get a handle on the scope of the help a caregiver might require.
Caregivers need education about the different actors within health and rehab for TBI. Take the example of a speech pathologist. What does one of those do? How do they help? How does a new caregiver decide if one is needed? Kaizuka says she really didn’t know until she was involved with the council.
Mentoring and Peer-To-Peer Is Critical
While counselors and therapists are all well and good, Kaizuka feels strongly that there’s no substitute for mentors who have been through the TBI experience themselves. “I believe a lot in mentoring. Being able to talk to someone who’s walked in those shoes,” Kaizuka says.
In that vein, Washington State has an organization called Headstrong, a group of families who have experienced brain injury and have lived through its challenges. It offers support to both the families doing the caregiving and the young people with the TBIs. And Headstrong is not unique; there are other support organizations across the country.
This peer-to-peer support is also vital as kids with TBIs become adults. They might need different care, and the available resources change. Plus, every family has its own needs. Advocacy—for your child, your family, and yourself as the caregiver— becomes more necessary.
“Being able to bear witness to real advocacy firsthand is not something everyone has had the opportunity to have. It’s not something you’re born with. It is learned,” Kaizuka notes.
And, since every family is different, having more intimate support through a peer-to-peer network is the most effective. Crawley sums it up with this: “Meet them where they’re at, and support them along the way.”
Parenting a Child with Traumatic Brain Injury — Sources
Journal of Pediatric Healthcare
Brain Injury Today Podcast
Brain Injury Alliance of Washington