Care mapping as reflection and celebration

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!

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More breakfast table talk

About a year ago I wrote about a brutally and beautifully honest conversation that I had with my daughter about her brother’s developmental disability. A wise friend commented that our conversation would be one of many “periodic check-ins.” She was right.

Not surprisingly, the last few weeks have created a need for more conversation.

A couple of months ago we started toilet training our son for the umpteenth time. It required intense amounts of attention, all landing during the winter holiday break, keeping us close to home and all eyes and hands on our boy (and his laundry). While he’s made great progress, apparently she’s “had enough of it,” according to the sign on inside of the bathroom door:

bathroom sign

In my defense, good ergonomics are a critical part of his success, and he’s in the bathroom every 30 minutes, so it’s less work to just leave the potty seat and footstool in place. But I get it. She puts up with a lot, and this was the last straw. Needless to say, we’re trying harder.

Then there was the breakfast table comment she made after all of the media attention that I have been getting these last couple weeks after the Huffington Post article about his complex needs. She had seen a copy of the care map on the laptop in the kitchen. “Mom, you know that web thingie that you made? Did you know that the G is for Gabe, and that he’s in the middle? Just sayin’.” Point taken.

It’s so much easier to deal with this now that we’re talking openly about it. I can imagine that not too long ago, sibling frustrations were never voiced and parental guilt just festered. Not too long ago, we didn’t acknowledge it either. But giving everyone’s experience some air and light is so much easier than denying it.

I’m so curious to hear what others are doing to support all their kids.

"Mommy, me and Daddy" according to my daughter  (age 3?)
“Mommy, me and Daddy” according to my daughter (age 3?)

Care mapping conversation deepens on Huff Post Live

The HuffPo article by Lisa Belkin, “Gabe’s Care Map,” generated a lot of conversation and interest in creating data-rich, holistic snapshots of just what it takes to raise our kids. I’ve heard from lots of parents who are already making their own. It’s so exciting!

Lisa and I continued the conversation on Friday on a segment on HuffPost Live. Joined by fabulous special needs mom and advocate Katherine Kowalski and Dr. Richard Antonelli of Boston Children’s Hospital, we talked about how care maps can be helpful not only for depicting the complexity of our care teams, but how care mapping can help make it easier for families and professionals to partner on care coordination.

More to come. Just wanted to get this link up for anyone who’s interested. Time to get back to playing!

Durga’s Tool # 637: Love, even when it’s hard

Another installation in my series of tools that helps me parent with compassion, courage and joy, inspired by the goddess Durga, who has always got my back.

Lisa Belkin at the Huffington Post did a wonderful story on me, my family and my Care Map on Friday. So many good things are coming out of it: new friends, new thought partners, new mentors, new opportunities. In some ways, the impact is easiest to capture in the stats: 9,000 visits to the blog, 4,000 Facebook likes, 1500 Facebook shares, 300 email shares. Impressive, unexpected, energizing. These numbers are connections, and it’s in our connection, in our community, that our message for inclusion and celebration of all people grows and thrives.

One unexpected consequence of the article was the public comments it would generate. Most of them were wonderfully supportive. Some were hurtful though, suggesting all sorts of things: that my son should never been born, that our society is harmed for having him among us, that we should stop investing anything in him, that I should stop whining. Even that my daughter’s name is dumb. I know, I know, the internet does strange things to people, making them feel invisible and invincible, free and even obligated to say whatever comes to mind. But ouch. It really hurt.

It hurt so much in fact that my first impulse was to label them as Jerks, to dismiss not just their opinions but their souls. To not only disregard them, but to wish them ill. Then it was to disengage–to stop reading the comments altogether (even the good ones, sadly) because I knew nothing good would come of it for me. Reading and responding would only perpetuate the toxicity of it all.

Author and visionary Oriah Mountain Dreamer once wrote: “Show me how you turn away from making another wrong without abandoning yourself when you are hurt and afraid of being unloved.”

Yes, show me how. How do I not abandon myself in this moment? Some guidance came this morning via illustrator Nathanael Lark‘s inspiring cartoon, How to Change the World.

How to change the world

It’s easy to consider another person a jerk when they hurt you. No one would blame you. And in this wonderful work of parenting a child with special needs, there are lots of opportunities to turn your hurt into hate. The problem is that it doesn’t change them, and it doesn’t change the world. The only way it changes you, if at all, is to make you smaller.

Thank you NLark for reminding me that even when I don’t love the messages, I can still love the messengers.