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.

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Bushwacking: Four stages of becoming a family leader

Tomorrow morning I’m going to lead a round table discussion for special needs parents on using advocacy skills for systems change, also known as family leadership. If you’ve known me for a while, you realize how ironic this is. A handful of years ago, I was anything but a leader. I was so reluctant to take on the role of special needs mom that I wasn’t even a follower. But now here I am. How did this happen?

Blazing a new trail

The first few years of parenting my child with complex special needs was like stumbling along an unmarked trail in the woods. I went in circles, covered in scratches, stumbling into poison ivy.

Then after a while I crossed paths with some more experienced hikers and started figuring stuff out—which mushrooms are edible, how to navigate using moss growing on the north side of trees. I had to let others know these gems! And so I stopped, turned toward the direction I just came from, reach out a hand to help those behind me could catch up.

Until finally, I knew the woods well enough to see that the trail was never going to take my family where we wanted to go. Even if it was marked, even if it was cleared. So I started blazing a new one.

A path toward leadership

While most people think that leaders are born to lead, that’s not always true. More often, they’re grown. This growth pattern is an expansion: an addition of skills, experience and expertise that allows us to help ourselves and eventually help others. Fellow special needs parent Eileen Forlenza calls it a progression to leadership. I’m not so sure it always moves forward; a new situation arises—a new symptom, a transition—and we feel like beginners again. But even so, if we step back far enough and squint, this pattern of growth toward leadership can be discerned.

Stage 1: Becoming ready to advocate

In all of the stages of family leadership that I’ve read about I’ve never seen this one included, yet it’s the most important. For many people, including me, it can be difficult to get in the driver’s seat. It doesn’t mean that we are neglecting our children; when I was in this phase, I was probably at my busiest and most stressed. I just couldn’t allow myself to get immersed enough to get to the heart of what my child really needed. It took several years of learning stress management and coping skills to have the courage to move into advocacy meaningfully. (At the same time, I often find myself back here as if I’m learning this for the first time.) Some activities of this stage:

  • Becoming accustomed to unexpected demands
  • Letting go of our expectations
  • Working through issues that prevent acceptance
  • Some useful skills: self-care, stress management, self-reflection
  • Taking care of other acute situations, i.e. financial, legal, emotional

Stage 2: Advocating for your family

In this phase, we learn to advocate for our own families. Some things we focus on:

  • Understanding the diagnosis, the symptoms and the treatments
  • Knowing our rights
  • Learning about resources & info via listservs, magazines, e-newsletters, trainings
  • Navigating the system and coordinating all aspects of care
  • Some useful skills: research, listening, organize information, cooperation, understand medical, educational and legal concepts

Stage 3: Advocating for our community

At a certain point, we learn enough about how to get our own child’s needs met but become sad or angry thinking about how many other families are still struggling. In an effort to pay it forward, we often engage in activities that aim at making it easier for others to make progress. And so we spend time:

  • Giving feedback: participating in surveys, focus groups, advisory councils, calls and emails
  • Sharing resources & information with other families via listservs, magazines, e-newsletters, trainings
  • Helping others navigate the system
  • Some useful skills: writing and public speaking, telling your story, supporting and coaching others

Stage 4: Advocating for system change

With more knowledge and experience comes the realization that the existing medical, educational, legal and society systems are simply not adequate to meet the needs of all people (especially our special kids), and yet they should be. At this point, we want to not only help other families make progress, but change the nature of the system itself. We start focusing on:

  • Lobbying politicians and representatives for change
  • Participating in the design, implementation and evaluation of system change
  • Mentoring others for leadership: A great leader doesn’t create followers; they create other leaders
  • Making the system easier to navigate
  • Some useful skills: lobbying, understanding systems, developing programs, mentorship, collaboration

Becoming a leader can feel intimidating. It requires new skills and courage at every step. It can be helpful to notice that leaders aren’t “born with it,” but are called to it. We can learn these skills. If we’re lucky, we have support and friendships for companionship along the way.

Some parting questions: Where are you on your path toward leadership? Notice how you can be at many places at once. When do you feel most like a leader? What made you ready to advocate? Who are the mentors who encourage you to lead? What skills do you want to learn so that you can be more comfortable leading? How can we support each other?

Never doubt that a thoughtful, concerned group of citizens can change the world; indeed, it’s the only thing that ever has.
Margaret Mead