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Creating Space for Caregivers

Over the past few years we have all learned, collectively, how to do things differently. Often this is hard because it involves shifting our mindsets to see and experience resources, supports and space in a whole new way. This is where we all entered into the recent workshops – Creating Support and Space for Caregivers – which highlighted Lifecourse tools for parents.

Exploring respite resources for families that are accessible was one theme. It has been increasingly difficult to find respite providers who are a good fit. Using the Trajectory Tool specifically to problem solve around what respite would look and feel like for your family was helpful, but also frustrating for some, especially for those who haven’t experienced formal respite or don’t see options available to them. Not knowing where to start and feeling overwhelmed is common and difficult. Starting in the “What We Don’t Want” box is often helpful. Many parents found it easier to back into the “Vision for a Good Life” section through knowing what they and their child don’t want.

Common themes/barriers to true breaks from caregiving that emerged were:

  • Lack of qualified/connected programs within the community
  • Caregiver being responsible for plans and/or education and consequences if it doesn’t go well (clean up)
  • Not knowing where to turn for outside support
  • Lack of understanding within extended family

The group also discussed shifting what we see as resources. Often we look outside ourselves and our family when we think of resources. Stress was released when we began to think of ourselves, our partners/extended family and even our child as resources. And we have immediate access to them. Starting from a place that sees what is already there, allows us to fill in the gaps with our family’s strengths and assets.

Examples participants shared of doing this:

  • respite provider who had the right mix of creative activity ideas and sensitivity to a child’s needs
  • person willing to play one-on-one with one child to give the parent space to focus on their other child
  • person who always says “yes” to FaceTime invitations to play Guess Who or BattleShip
  • friend who drops off boxes of Tinker Crates that become rainy day rescue kits

Oxygen Mask Episode 24: Insights from a care coordinator

In Episode 24, Beth interviews Tara Mahin, a Care Coordinator in the pediatric practice that cares for both of Beth’s kids. The two discuss ways care coordinators can help parents of medically complex kids, including parents raising kids with autism. The conversation illustrates how a little help goes a long way in helping families navigate systems more efficiently, lending continuity to care, and providing and a “warm handoff” among providers. Listen in and check out the show notes to learn more about accessing care coordination.

Show notes:

Find Health Care Homes at the Minnesota Department of Health’s website. Health Care Homes include care coordination as part of their services.

Tara Mahin is a Care Coordinator at South Lake Pediatrics in the Twin Cities metro area in Minnesota.

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