tips for caring for ourselves
it’s easy to put ourselves last
But when we fill up our own cup, we give ourselves the strength and clarity needed to be present, compassionate caregivers.
The below resources can help us begin to process our day-to-day emotions, manage stress, and redefine hope for our families.
processing day-to-day emotions
The Caregiver Action Network provides support to family caregivers of loved ones with rare diseases. Through a variety of online resources, this organization helps us take care of ourselves as we take care of others. Examples include practical tips for addressing feelings of anger and personal insights into the emotions that can accompany grief.
managing stress and relationships
Lisa Greene founded Happy Heart Families after she became a mom and realized how much help she needed. It's not easy being a parent, especially of a child with special health care needs. Many of us feel overwhelmed until we develop the tools and skills needed to begin dealing with this new way of life.
One way that we can help reduce stress and increase confidence is to learn what does and doesn’t work in the way of communication, child discipline, and motivation. Greene’s articles, audio, and video clips give us practical tools, tips, and strategies for handling the unique issues many of our families face. Examples include:
redefining hope
When our hopes, dreams, and expectations for our children shift in unanticipated ways, we may feel sadness, anger, frustration, and grief. We may also experience new joys as we begin to redefine hope. Courageous Parents Network is an educational platform that empowers families caring for children with serious illness. With videos, podcasts, and printable guides from families and pediatric care providers, this organization helps us advocate for our children while caring for the needs of other family members — and ourselves.
bringing together people who “get it”
Sneha Dave has lived with ulcerative colitis since the age of six. While still in college, she founded a non-profit organization to connect and empower young adults with chronic and rare diseases through advocacy events and programs.
Dave’s Health Advocacy Summits are daylong, no-cost, in-person and virtual events for young adults (between 13 and 30) with chronic and rare diseases. Summits are a chance for young people to connect with others their age who are going through a similar struggle and build a network of support.
Dave also hosts virtual support meetings, twice-monthly opportunities for young adults to come together for social engagement and peer support.
partnering with support teams
Family Voices is a national family-led organization of families and friends of children and youth with special health care needs and disabilities. Access a variety of online support resources or find a Family Voices affiliate in your state.
living with autism spectrum disorder (ASD)
Founded by Tara Tuchel, a speech/language pathologist who has specialized in autism for the past 20 years, Autism Little Learners offers resources and ideas for families and educators. Her downloadable stories provide education about a variety of life situations in an easy to understand way. Examples include:
going back to school with online learning
staying with my cohort at school
what is physical distancing?
why aren’t they wearing a mask?
my dad is in the military
air travel stories and visual supports
and more!
HANDS in Autism® is a training and resource center that is making a significant impact in the lives of individuals with autism spectrum disorder (ASD) and other special needs, as well as their families and caregivers. Its free tools and activity templates offer tips for:
riding the bus
getting a haircut
flying on an airplane
learning a locker combination
ordering a pizza
telling time
preparing for a job interview
managing the holidays
and more!
HANDS in Autism also offers tips to help us manage stress and begin to take care of ourselves as parents and caregivers.
