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!

Secret hand gestures

Yesterday I watched a woman gently coax her adolescent son away from the edge of a meltdown. As they headed toward the exit of the store we were all in, he began waving his arms and grunting “No” in a loud voice. “It’s OK, David,” the woman said quietly, stroking his back. “Take a deep breath. It’s OK.”

I caught myself looking over at the two of them. I marveled at her ability to speak only in a tone of tenderness and compassion, not desperation or nervousness or embarrassment at causing a scene.

It’s in moments like this that I wish there was a secret hand gesture, a high-five or a thumbs up, that would let that other person know: “Hey, I’ve been there. I see you. You’re doing a great job. If you need a hand, let me know.”

If she had looked at me, she probably wouldn’t have seen any of that. She would have seen a stranger staring at her, straining to send off vibes of empathy that probably look a lot like pity. And maybe that would have flustered her and caused her pain. So instead, I ignored her, turning back to the rack of dresses as if they were the most interesting thing in the world.

I know so many times I have seen others look at me and my son, who isn’t on the autism spectrum but who has a number of quirky behaviors that seem to captivate the attention of strangers — when he has an accident that soaks through his pants, talks too loudly at movies (usually perseverating on a word or phrase for what feels like an eternity), or turns eating into a full body experience when we’re at a restaurant.

In those moments, I often wish to simply disappear. I just assume that people don’t understand, that they’re judging my son or my ability to parent.

I have to give a special thanks to the recent post on Rhema’s Hope for not only writing, always full of grace, but for pointing out a short segment on the TV show What Would You Do? that shows the reactions that people have to a family with a child on the spectrum when they go out to eat. (Watch the segment here.)

The reactions of the fellow diners made me reflect that maybe I’ve been underestimating people and that there is no need for a secret sign. Can it be that I’m giving strangers too little credit? And what does my discomfort say about me? Is it possible that it has more to do with me than with them?

Maybe the glares I feel are, in fact, filled with empathy and support. Maybe there’s no need for a secret sign. I’m going to play around with that perspective for a while, and see how it feels.  Much to think about.

I’m really curious to know what other folks do in these situations. How do you feel? Does it keep you from going out? Has the feeling changed? How do you show support for strangers, if at all? Do you have a “secret sign”?

Show me love

Everyone shows love in different ways. Children with special needs are no different in that regard, maybe even hardwired to be more different than usual. While Williams Syndrome is associated with a “cocktail party personality,” one of the defining characteristics of Autism Spectrum Disorder is a challenge to make typical social cues. Down Syndrome literature is full of descriptions of bubbly personalities. Not to mention individual personalities that create an endless rainbow of lovey-dovey possibilities. When it comes to showing love, these kids are all over the map just like the rest of us.

My son has a developmental disability described in the literature as being associated with “a gentle personality,” but he’s not very affectionate. Not that most nine-year-old kids are, but the frequency and ease with which my daughter can wax poetic on how much she loves her family provides a stark contrast at times.

Mostly I’m fine with that, despite my hallucinatory desire for parenting to be one long version of “Guess How Much I Love You.” There are small, subtle signs and I take them where I can get them. Like holding hands on the sidewalk because he’s nervous about falling. Like the 16-step hug I get when carrying him up to bed at the end of a long day. Every once in a while he’ll climb into my lap after dinner and lean back for a few seconds, letting his body sink into mine; I sit so still, not shifting, barely breathing, soaking it up.

In my needier moments, I flat out ask for affection, sometimes with success, most often not. In the minutes before he falls asleep, when he sometimes seems so clear and able to recall details about his day or ask questions that reveal an inner world much richer than I give him credit for, I’ll take a chance and ask if he loves me, hoping that in this moment of quiet and clarity he’ll indulge me. Last night, as we lay in the dark after reading the Best Buy flyer for the 100th time, I gave it a shot.

“Do you love me?” I asked. “Yes,” he sighed. “How much?” I prodded greedily. “One more minute,” he replied. I was confused and a little disappointed. Then I realized that in his life, “one more minute” are often the best words he can hear — words of permission to continue with a favorite activity after his protest over my request that we stop. As in: “Time to turn off the TV,” I’ll say. He’ll whine. “OK, one more minute.” Like that.

Pushing my luck, I asked, “You love me one more minute?”

“Yes,” he said, sighed, turned his back, and fell asleep.

Dear sweet boy, I love you one more minute…and back.