“One thing we know – when we spend our days surviving, it’s hard if not impossible to dream.”
How has the Child Neurology Foundation utilized social capital to create opportunities for families in need?
While we are not rich, we recognize that we are blessed with a lot of social capital which has allowed us to get care for Hali and create opportunities for her that many families in our situation do not have access to. We are big believers in doing what we can to be part of the “rising tide that lifts all ships.” It’s not a lack of love or commitment, it’s a lack of opportunity and maybe even lack of enough connection or relationship to even know that opportunities exist. Our work supporting caregivers over the past 20+ years has been our attempt to change that for these families who are willing to work hard when they know what they’re working for.
What has been CNF’s focus in supporting caregivers over the past 20+ years?
Our primary goal is to help parents and caregivers navigate the emotional journey of caring for a child with special needs. We aim to help parents and caregivers maneuver through the emotions of broken dreams, missed milestones, and the reminders of a life much different than we had in mind when our kids are born. We believe that this emotional journey often leads to chronic grief. Helping parents and caregivers handle these emotions while meeting the daily demands of their situations is a very humbling honor for us.
How does CNF define and address the concept of chronic grief?
Grief is our emotional response to loss, including the loss of dreams and expectations. We agree with the notion that the emotional journey of caring for a child with special needs often leads to chronic grief. Our aim is to help parents and caregivers maneuver through those emotions and find new, appropriate dreams for their children and families. We believe that every human being has a purpose, and as parents, it is our job to create an environment that allows them to accomplish that purpose. Living into our purpose creates meaning in life and can move us from despair to hope. One thing we believe – every human being has a purpose. As parents, it is our job to create an environment that allows them to accomplish that purpose. Living into our purpose creates meaning in life. Living a life of meaning can go a long way in moving us from despair to hope. One thing we know – when we spend our days surviving, it’s hard if not impossible to dream.
What qualities does CNF believe parents need to develop in order to become powerful, healthy advocates?
One of our rules for the “advocacy game” is “Parents know best, but we don’t know everything.” We believe that parents have pieces to their child’s puzzle that no one else has, and this should produce courage to speak up in any setting. At the same time, we recognize that we don’t know everything, and that’s why we emphasize the importance of humility. We encourage parents to have enough humility to allow others to contribute their pieces of expertise to the puzzle, even in those times that we may not agree. By bringing courage and humility to our child’s team, we can build the best possible team around him/her.
What are the foundational principles of the Family Support Training 101, and why was Family Support Training 201 launched?
The foundational principles of the Family Support Training 101, created in 2020, are giving Peer Supporters the tools to help the parents they serve wade through the emotional journey, create healthy boundaries, and build strong teams that can adjust to changes in season. While the organization received amazing feedback for that training over the years, they recognized that there was still a lot of work to be done to encourage caregiver health over the entire journey. Hence, Family Support Training 201 was launched in January 2023 to address how to identify the mindset toward stress and adjust it to produce better mental health. The goal of Family Support Training 201 is to help caregivers see that they have overcome many challenges in their lives and possess the tools to handle future difficulties. Through journaling and reflecting on past experiences, caregivers can gain confidence from their recorded history of resilience.
What is the ultimate belief and driving factor behind the CNF’s work? How do they prioritize the emotional health of parents and caregivers?
For the organization, all of their work comes down to one thing: they know that all kids thrive when parents are emotionally healthy. They acknowledge that children can have the best Individualized Education Programs (IEPs), the latest therapy services, and abundant resources. However, the organization’s focus is to provide caregivers with tools to keep themselves emotionally healthy. They encourage creating space for relationships that support caregivers as they give so much to their children. Moreover, they aim to help caregivers find a routine where everyone important to them, including themselves, gets a turn. By prioritizing emotional health, the organization recognizes that caregivers’ well-being directly impacts their children’s well-being and overall thriving.
For more information on our Family Support Training please email:
Child Neurology Foundation