I recently re-read Ira Sukrungruang’s An Open Letter to Anyone Who Will Listen #SAVECITYUMFA. It was written two years ago, in 2015, long before the 2016 Presidential Election turned the world on its head and tossed us all down the rabbit hole.
In his letter, Sukrungruang reflects on the loss of a specific writing program, but also on the dwindling support for arts and humanities in general—an issue that I now must grapple with as my community’s Poet Laureate. I read his words and was reminded, once again, that the most powerful advocacy is that which is fueled by the heart.
No matter what the issue, passion is what truly makes advocacy sing. Yes, Sukrungruang is a writer—a clearly gifted one—but heart and passion are the fuel that sets his advocacy on fire.
As the parent of a special needs child, I know all to well that heart and passion are often a double-edged sword. There is nothing we as parents are more passionate about than our kids. We need to channel that passion in order to become effective advocates. Because with passion comes strong emotion.
Strong emotion is like a stranglehold on the mind and the throat. It can make someone panic or go crazy with fear. Some parents fight. Some shut down. Others flee. When our child’s future is at stake, it can seem like a life or death struggle of epic proportions.
So what can we as parent advocates do?
Most importantly, we need to harness our passion and keep it in check. This is a tricky balancing act. For me it’s often helpful to bring a trusted family member or friend to Individualized Education Plan (IEP) meetings, particularly when I was beginning my advocacy journey. The friend served several purposes: witness, note talker, bad cop (to my good cop), brainstormer, and sounding board. But most importantly, she kept me calm and centered. This is more of a psychological or emotional benefit, but as a single parent without a partner, it was crucial to not go in alone. A friend also typically has more emotional clarity and detachment, which is why I recommend this strategy so often to parents.
I had a friend who came with me to numerous IEP meetings early in my daughter’s school career, and I owe Karen a debt I can never repay. After she moved to another state, I began to bring Barb, another close friend who is a retired special education teacher and my daughter’s reading tutor. In the past I’ve brought in-home therapists and case managers as well. I hope one day to get to the point that I don’t need to bring someone with me to my daughter’s IEP meetings, but maybe I never will. That’s okay. Because the point is to discover what works (and doesn’t work) for you the parent, as well as for your special needs child.
The bottom line: use your passion and love for your child to supercharge your advocacy efforts. Just remember to keep your emotions in check.