Since all the publicity around Gabe’s Care Map in Lisa Belkin’s Huffington Post article in January, I’ve heard from many familes who created their own Care Map. Today’s post comes from Elizabeth Cummings of Montana, mom to Charlie and Max, about how she created her own and what it meant to her. I love how she used the process to support her sense of capacity and celebration, or as I’ve often expressed it, going from “Why me?” to “Lucky me!” My grateful thanks to Elizabeth for being willing to share her reflections! 

As a parent of a child with autism, it can feel as though I’m always in a hurry. Between juggling therapy sessions, medical appointments, school carpool, and trying to find those few precious moments to myself, sometimes there simply aren’t enough hours in the day.  When it comes to managing my time online, I’m ruthlessly efficient, but when a family member posted Gabe’s “care map” to my Facebook page recently, I paused. The graphic drew me in because it so beautifully illustrated what I could rarely find enough words to express. I looked closer. And then I clicked “share.”

When I saw Cristin’s work, I felt exhilarated and validated. Without even knowing me, it was as though someone had drawn a picture of my life. To me, the model’s strength lies in its simplicity. Finally, a clear and effective way to communicate the working parts of a daily life very foreign to most outside the special needs community. I knew the care map concept was important, especially in helping practitioners understand the many aspects of care parents of children with autism find themselves managing. I also knew that I had to try making one myself.

At the center of our care map is my son, Charlie, a loving and intelligent six-year-old with ASD. He is surrounded by a large and caring family—his first level of support. From there branch the many specialists, educators, community members, and policy makers who contribute to his care and development. Charged with coordination is the parent of a diagnosed child—armed with little more than love, large three-ring binders, and a laptop—doing her (or his) best to navigate this complicated world of autism.

EC care map

Creating my map helped me reconsider my own role in my son’s care plan.  I have come to see myself as the central facilitator between many separate agencies. With this awareness, I’ve been able to better communicate with my son’s practitioners and more actively embrace the myriad tasks of care management.  The exercise allowed me to step back and view Charlie’s system of care with new perspective.  I found comfort in all these little circles, each representing a different system working to support my son and our family.

Elizabeth with her sons Max and Charlie
Elizabeth with her sons, Max and Charlie

When these support pieces are each in place, all adequately funded and working in partnership, then families become empowered and the image of autism can start to change.  The picture facing the millions of parents struggling with an ASD diagnosis in 2013 doesn’t have to be solely one of loss and heartache.  It can also be the look on my face when, at age 3, my son first recovered the word “mama” in therapy.  It can be the sound in his teacher’s voice when she excitedly tells me about a conversation he has had with a friend in kindergarten.  It is the new perspective these children impart, and the special joys and blessings they share with those who love them.

Thanks Elizabeth! If any other folks out there would like to share their care mapping story, let me know!

Published by Cristin Lind

Facilitator, consultant, speaker for better health and care through patient-professional partnership. Passionate about helping change agents build courage and agency. She/her.

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  1. Thanks for sharing! Elizabeth, I love how you describe the “little circles” of support in your life, gave me a new perspective.

    1. The “fire” (or “activation” or “engagement” as the health professionals call it) for me comes from the right blend of knowledge + skills + confidence + community + acceptance + celebration. When my son was younger, I was so overwhelmed by just the possibility of having a child with such great needs that I couldn’t do anything, and so my only option was denial (or “disengagement” as the health professionals call it). This could be a much longer post, but to me if the stress is TOO great, the fire will never kindle. Does that make sense?

  2. Thanks, Elizabeth! I learned a lot! Charlie and Max are blessed with an incredible Mom and family! And community!

    1. Community is so important! I feel very grateful to know that both of my children are growing up to feel valued and accepted. To me, this seems like our most important task as parents and community members. Thanks for reading!

  3. These caremaps are amazing. I heard about Ms. Lind’s caremap in a Care Coordination Webinar hosted by the American Nurses Association yesterday. My heart is aching with empathy and admiration!

    1. Thanks Ellen! Care coordination is important and it’s exciting to hear that the ANA is doing so much in terms of training. Do you think you’d encourage the families you work with to sketch they’d own care map?

  4. Hi Cristin, Your care map has obviously touched a lot of people, including me. It inspired an essay that now appears in a just-published anthology, Mamas Write. I wanted to thank you and would be happy to send you a book too. (I tried to find another way to get in touch but this seemed the easiest.)

  5. Hi Cristin,
    I first saw your Care Map back in 2012 and now I am working for The Arc of Massachusetts as the Director of Government Affairs. I am working on Mass Health’s restructuring (a big innovation project). Your care map would be a wonderful tool to use to show the need for increased care coordination services for our families. I would also love to use it to help us with legislating for additional family support funding. You work is wonderful here and I thank you for all you do for your family and community.
    Take care,

  6. Hi Cristin,
    I am a Human Centered Designer doing some work for people with Intellectual and developmental disabilities, this map is a great way to visually help people understand what parents/families are going through. Would you mind if we use your map for internal purposes to support our innovation work?

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