“Honing Our Skills: A Talk by Two Advocacy Professionals”

The special needs parent group that I belong to hosted a talk called “Parental Rights in Special Education” by two special ed advocates last weekend. One of them is Crystal Rogers of Standard Advocacy, whom I met at the Autism NJ conference back in October, and she spoke so eloquently during one of the Q and A sessions that I couldn’t resist inviting her to speak to our group. She brought Sharon Webber along with her, who is a consultant and trainer for navigating the Children’s System of Care.

It was a privilege to listen to them speak with such conviction and knowledge on a subject that all of us attendees have to grapple with. Sometimes too, speakers come with a set PowerPoint presentation and they have to get through it before they can tackle people’s questions. No offense to people who like PowerPoint, and it makes sense at conferences and more formal settings, but I find it stultifying. Usually it’s someone reading right off the screen, and I can count on one hand the number of talks I’ve attended where the speakers have been adept at making off the cuff remarks rather than just reading what is up there. We don’t need to drive somewhere and hire babysitters for such prepackaged endeavors..

On the other side, extemporaneous speakers sometimes get caught in the overgrown thickets of narration, and end up rambling. That’s a whole other loss of audience engagement. Er, I guess I’m admitting to being a really picky listener.

I’m happy to report that neither scenario I just described was the case at Crystal and Sharon’s talk. Both of them are mothers of special needs children themselves, and they stood before us, two amazing examples of people who underwent the transformation that needs to happen so that we can emerge strong enough to take on the challenges of parent advocacy. I took a pause to acknowledge the Durga energy in the room–what happens when a woman combines her mental acuity, graceful strength, boundless love, and justified anger into something unstoppable.

It isn’t my intention to summarize their talk here. Some of it is sacred to the parents who brought their stories to what should remain a private space. We talked about IEPs, tackled specific communication breakdowns, and the elephant in the room–how alienating it is when we feel certain cultural judgments from the child study team, and don’t want to call them out for fear of the repercussions landing on our children.

Crystal was giving us a brief description of her own journey, and she said that what we all learn is a new way to live. That really resonated with me. It isn’t only about learning to advocate. It’s also a way of learning to see the world–through the eyes of our children. And changing how we approach that world ourselves–we can’t unsee what we have seen after this kind of parenting journey. And we learn to deal productively with that world so that we are targeted in our engagement, choosing our learning resources carefully, and expending our energies in areas where we are likely to be effective, rather than frittering away our souls in environments where they will not be nurtured.

In the end, what we are really crafting is ourselves. We all turn ourselves into people for whom special needs is our highest priority, and we learn to see that as a joyful thing rather than a dreaded duty. Including our children in the larger world has its inherent challenges already. None of us want contrived challenges to stop us–lack of acceptance, lack of funding, lack of heart, and lack of foresight.

Thank you to Crystal and Sharon for being the dynamic, forthcoming and generous people they are. In solidarity, as Crystal always signs off,

Radha.