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!

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Opportunity for advocacy: Did you make a care map?

My care map generated a lot of attention and new friends over the last few days. There’s a media request for follow up from folks who went ahead and made their own. If you did and you’d be willing to share it, please let me know by leaving a comment. Thanks!

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.

Stages of grief and special needs parenting: Is acceptance all there is?

The stages of grief—the emotional progression following a loss made famous by Elizabeth Kubler-Ross—has often been applied to experience of special needs parenting. To those of you who aren’t raising kids with special needs this might seem really weird or just plain morose, ungrateful or unkind. I mean, nobody actually died, right? But although none of us gets to live out the fantasy life we dreamt up before the kids arrived, sometimes the gap between the life you expected and the life you’re living is so wide that you do feel a sense of grief. Maybe grief for the imaginary child you naively conjured up. Maybe grief for the confident, easy-going parent you thought you’d be.  Maybe grief for an easy-breezy life that you imagined would be yours. Maybe all of the above.

In some ways, the metaphor has been my salvation, providing a roadmap for an otherwise emotionally disorienting parenting experience. In her article “The Natural Emotional Cycle for Parents of Children with Learning Disabilities,” Dr. Jodie Thorz Dawson’s swiftly summarizes Kubler-Ross’s well-known model and draws parallels to parenting a child with special needs. Parallels to my own parenting experience spring to mind with little effort. I won’t re-hash them here because they’ve been so often explored, but just as a refresher, the stages of grief (and my own shorthand memories) are:

  1. Denial. “He’ll outgrow it. Everything will be fine.”
  2. Anger. “If the teachers/doctors/insurance company/society would just do what I tell them to, everything would be fine.”
  3. Acceptance concept.Bargaining. “If I quit my job/sell my business/dedicate my life to getting that out-of-district placement/cure/experimental therapy, everything will be fine.”
  4. Depression. “No matter what I do, nothing will ever be fine. Ever.”
  5. Acceptance. “It is what it is. Sometimes it’s actually fine.”

The stages of grief have been a helpful framework for me. It was always comforting to feel that I was going through a universal experience, and if I applied myself, I’d come out a healed, accepting person. Certain moments and milestones do feel particularly heavy with grief, something I wrote about in a post a while back.

Lately though, the stages of grief model feels like it ends one stage too soon. Maybe I’m misunderstanding what’s meant by “acceptance,” but the word itself feels too neutral, too flat, too stoic, too stiff-upper-lip to describe the joy and richness I’m experiencing with my son, my life and myself. Because of him and the experience of parenting him, I’m feeling things, meeting people, walking through open doors that would never have been available for me without him. That’s not accepting—that’s growth. Expansion. Celebration even.

I’m not sure what I’d call this next stage. Any ideas? Has the stages of grief framework been helpful for you, and do you think it needs some more stages?