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.