I have spent a lot of time with my son in a children’s hospital. When you’re there long enough, you start to notice more than the monitors and routines. You notice people. Being surrounded by other parents of disabled and medically complex children is both comforting...
During the transition to adulthood, paperwork becomes part of daily life. So many things are happening at once, and none of them move on the same timeline. We might be just starting to read a new package while a doctor is filling out their portion, and then the social...
Why This Glossary Matters For far too long, caregiving language has been dictated by medical, educational, and social systems that fail to reflect the lived experiences of caregivers and, most importantly, their loved ones. Words like "burden" and "non-compliant"...
When it comes to caring for a neurodivergent or disabled child, there’s no roadmap, guidebook, or manual to prepare you for what’s ahead. When my son was first diagnosed, I remember feeling as though I’d stepped into an entirely different world. While I had my...
Caregiver Resource Guide: Organize Care and Support with Ease What is a caregiver resource? A caregiver resource is a collection of essential tools, templates, and information designed to help family caregivers organize, manage, and track all aspects of care for...
Families that choose in-home care for their loved ones take the brunt of inadequate systems of care. Some implications for families One or both adults in the home often have to forego their careers to care for the family member, forcing them to live in poverty....
To protect our loved ones, hundreds of thousands of families who relied on in-home care went without caregiving or nursing throughout the pandemic. Family members picked up the slack. In our home alone, the government saved on three part-time caregiver paychecks for...
When families are up in arms about caring for our loved ones, it's not because we don't want to do it. It's because we don't want to do it in this way. Parents/guardians/caregivers hardly speak up about our reality because we are met with options that set our children...
Caregiver Resource Guide: Organize Care and Support with Ease What is a caregiver resource? A caregiver resource is a collection of essential tools, templates, and information designed to help family caregivers organize, manage, and track all aspects of care for...
Families that choose in-home care for their loved ones take the brunt of inadequate systems of care. Some implications for families One or both adults in the home often have to forego their careers to care for the family member, forcing them to live in poverty....
To protect our loved ones, hundreds of thousands of families who relied on in-home care went without caregiving or nursing throughout the pandemic. Family members picked up the slack. In our home alone, the government saved on three part-time caregiver paychecks for...
When families are up in arms about caring for our loved ones, it's not because we don't want to do it. It's because we don't want to do it in this way. Parents/guardians/caregivers hardly speak up about our reality because we are met with options that set our children...