Have you heard of care mapping? It is a process caregivers and care coordinators undertake to visually (and mentally) organize all of the connections they maintain for the child or adult in their care. I stumbled across this practice through an article posted to Facebook by an advocacy group for parents of special needs children in my state. The woman spotlighted in the article, Cristin Lind, is the mother of a child with complex medical needs. The care map she created got the attention of the Huffington Post a while back (which is the article I read), as it illuminated the circus act parents of special needs children undergo in order to maintain dozens of connections for their child and get the appropriate care. Cristin’s map revealed seventy different connections when she was finished with it–with color-coded sections for each category of her son’s care and circles stating the role of each person or entity with whom she and her son had a relationship, and lines mapping out the connections between those circles. SEVENTY. That includes everyone from the bus driver of his specialized transportation, to advocacy groups and support groups, to school professionals and therapists, and of course, the many doctors and specialists who care for her son.
Of course I immediately started making a mental image of C’s care map while perusing Cristin’s. I did a little more research on her own website, Durga’s Toolbox, and looked through the excellent resources about care mapping she links to there (in this post, specifically). Tonight I sat down and attempted to create my own care map for C. As I was drawing and erasing and redrawing and adding ovals here and moving ovals over there, I remembered the list of phone numbers I had made this summer and pulled it out to help me remember all the connections C has in his little life. This was a list of about twenty names and phone numbers just written out on a piece of lined paper with a brief description of who each person is. I was so sick of looking through my giant red accordion file that holds all of C’s paperwork every time I needed a phone number, and I hadn’t yet gotten my snazzy iPhone, so I finally just sat down and made an old school list. I still refer to that thing at least three times a week (even with the entry of an iPhone into my life), so it was definitely twenty minutes well spent. Looking at it again in the context of care mapping, I realized that this was my own crude attempt at the practice this summer, before I even knew such a thing existed. I made it at a moment when I was feeling slightly adrift in the wash of summer’s ocean of shifting schedules. Each week brought a new schedule for therapies (Can I come at 3:00 on Monday instead of Wednesday this week? Are you available for two sessions this week?), there were endless forms to be filled out for this special clinic and that special clinic and preschool… And I really wanted to do was take my kids to the gosh-darn beach and play in the sand. I needed something to help me organize my swirling brain, and that list was my attempt at it. Looking at it I can see how I first dutifully attempted to organize it by category, with the State numbers at the top, then special medical clinics next, then general doctors…and then it all fell apart in a random list of people and numbers.
So, in comes the care map. Making the little ovals and connecting lines (and taking Cristin’s cue of putting a little door at each place where we find a barrier in accessing that care*) was like breathing a huge sigh of relief. Finally, it’s all organized, at least on paper. Finally, I can compartmentalize the thirty-something (this first draft has thirty-four ovals) connections into groupings. The physical act of drawing the map was enormously satisfying. It was validation that there is a legitimate reason I feel a little bit frazzled many days. I am trying to keep thirty-four balls in the air, and I only have four limbs. Two of which are taken up holding my children. Hence, the circus act I mentioned earlier. It’s a lot to expect of a woman with chronically tight hamstrings.
I’ll post a picture of the final draft of C’s care map when I’ve finished it.
* Can I just relate what I said to John about barriers, though it’s slightly off topic? Which is that I feel like, right now, I need to put a big door labelled DCYF around the middle circles that represent C and our family? Because, seriously, this state guardianship business feels like a giant steel fire door between our family and the care C needs. Yes, he’s currently receiving everything he should be, but MY GOD it’s a pain in the ass to get all of it organized when you have to go through five layers of government bureaucracy to do so!