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Sunday, January 27, 2013

Care Maps: Special Needs Mom Inspires Others to Illustrate Their Own Support Networks

From The Huffington Post Parents Blog

By Lisa Belkin
January 26, 2013

When Katherine Kowalski read the story about Gabe's Care Map here on HuffPost Parents last week, she recognized her own life. Like Gabe Lind, whose mother, Cristin, drew a complex web to reflect all it took to care for the medically impaired ten-year-old, Katherine, too, was having a difficult time explaining her life to those outside it.


MUST SEE VIDEO (27:19) on Huff Post Live: A conversation with Katherine Kowalski, Cristin Lind and Lisa Belkin.


Her two-year-old son, who she calls Orange on her blog to protect his privacy, does not yet have a diagnosis for his cluster of symptoms, delays and disabilities.

"Poring over (Cristin's) map and nodding in recognition," Katherine writes, "I started to think about how I might communicate what life is like caring for Orange, using images as well as words." The result is a work of art, as well as a graphic representation of the emotional journey Orange's family takes every day.

Both Katherine and Cristin appeared on HuffPost Live where they agreed that making their maps -- seeing their challenges and support systems in black, white and multicolor before them -- was reaffirming. It allows anyone, whatever the details of their life, to take stock, and appreciate their village.

Katherine Kowalski's's care map is below. Hufffington Post invites you to draw your own and send it to them at parents@huffingtonpost.com. They will collect them as a tribute to parents, and all that they do.

Patti Durovchic's Care Map

Patti writes: I have sort of a different perspective, as my daughter, Katera, is now 16-years-old. We only just recently, at long last, got an actual diagnosis of a rare genetic micro deletion syndrome. She has multiple medical and developmental issues that are quite involved and complicated, so we've had many, many people involved with her over the years. This care map is more personalized to our particular child, at this moment. it certainly doesn't include everyone who's worked with her over the years. That would require a wall-sized mural.

My care map is bright, colorful and curvy because I'm an artist and that's how I think. When I created it, I wanted to do it intuitively, not trying too hard to make it "pretty" or organized in straight rows, but attempted to more-or-less represent what I *feel* all the time.

Christi Johnstone's Care Map

Christi writes: Here is a copy of the care map I created for our almost three-year-old daughter Grace who suffers from severe apraxia of speech. I've shared in greater detail on my website what it's like to live with apraxia. We are only 18 months into our journey as a special needs family, and the lists of doctors, specialists, therapies, interventions and needs continues to grow.

Cristin Lind's Care Map

Read more about Cristin Lind's experience HERE.

About Lisa Belkin

Lisa Belkin is the Huffington Post’s Senior Columnist on Life/Work/Family. She joins HuffPost Parents after a multi-decade stint at The New York Times, where she was variously a national correspondent (based in Houston), a medical reporter, a Contributing Writer for The New York Times Magazine, and the creator of the Life’s Work column and the Motherlode blog.

The author of several books (including Life’s Work - Confessions of an Unbalanced Mom), Belkin was also the host of Life’s Work with Lisa Belkin on XM Radio, as well as a regular contributor on parenting topics to Public Radio’s The Takeaway and NBC’s Today Show.

Her own personal life/work balance includes her husband, Bruce, her two sons (who are highly amused that anyone thinks she is a parenting “expert”) and her Wheaten terrier.

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