Creating Space for Caregivers

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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

While it can be tempting to look outside your current circumstances for chunks of time away, recognizing and embracing slivers of opportunity within your days and current supports is a worthwhile starting place. Being intentional about drawing upon these resources can be a starting point for growth and sustainability in your respite plan.

Acknowledgements

This article and the related workshops were made possible thanks to a grant from the Minnesota Department of Human Services.

Author: Shannon

Shannon parents a son on the spectrum, lives in MN and writes to stay sane. She is passionate about connecting families to the services that will transform their lives. Read her full bio here.

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