Mobilizing a National Family Leadership Network: Highlights from the 2016 NFADB Symposium

Authors: Heather Withrow, Family Leader, Austin

Keywords: family wisdom, family leadership, National Family Association for Deaf-Blind, conference, Cogswell-Macy Act

The 2016 NFADB symposium, “Mobilizing a National Family Leadership Network”, took place on the beautiful campus of St. Edward’s University, in Austin, Texas from July 16-18. There were presentations, parent panels and group break-out sessions, buffets, cash bar, dinner out of a food truck, live music, ice cream, awards and recognitions, booths and handmade products for sale throughout the weekend. The sign language interpreter and SSP coordination was excellent, many thanks to Susanne Morgan Morrow and Kathleen Peters for taking care of this for me and my fellow Deaf and DeafBlind attendees.

The Saturday highlights were keynote presentations by Eduardo Madera and George Stern, both from DeafBlind Citizens in Action. We were also entertained and inspired by Austin area DeafBlind and Synthfreq sisters Crystal and Danielle Morales’ music video, “Exploring My World”, and their behind the scenes talk. (Editor’s Note: you can experience the song for yourself at https://www.youtube.com/watch?v=_AQSrCNwEJI and nfadb.org) There were facilitated topical tables where participants could participate in two opportunities to focus on issues that are important to them. There were 10 topics in all, including siblings, IEPs, jobs and transition.

The evening’s Mary O’Donnell Social was held in the simply elegant Maloney Room upstairs in the Main Building, from where we had a gorgeous view already being on the top floor of a building on top of a hill. We looked out over the trees, homes and small buildings with downtown Austin’s buildings reaching toward the sky in the distance.

On Sunday, there were great back-to- back presentations by Mark Richert on the sorely needed Cogswell-Macy Act and Robbie Blaha on qualified personnel in education. There were two separate panels on the topics of how qualified personnel made a difference in their or their kids’ lives and the second panel was of parents discussing their child’s DeafBlind adult life, realizing their dreams.

We enjoyed deliciously sweet and savory crepe dinners served out of Crepe Crazy’s food truck. Crepe Crazy is local deaf-owned and operated food business in Austin. They have two brick-and-mortar restaurants in the area. I made sure I was among the first few in line! The very last session on Monday, July 18th had attendees gather together by states and discuss ideas and actually create an action plan for following through on them. I am pleased to report that my group, Texas, targeted July 28th as our Cogswell-Macy Act Texas Call-In Day. Many of us reported calling in and e-mailing our legislators’ offices. As we all know, we still have work to do as we still do not have a republican Senator sponsoring our bill. My favorite part of all of this, intertwined in everything, was meeting, reuniting and talking with individuals with their own streaks of paint in this canvas of deafblindness. I got to spend quality time with baby Clarisa, who is the only other person in this world like my son Orion, and her family who came to town from Wisconsin for the symposium. I finally met in person another inspiring mother I “met” through a Yahoo email listserv when Orion was a baby. People connected, planned, interacted, laughed, listened and made even more memories from our time together on the Hilltop of St. Edwards University. It was a successful symposium and I look forward to the next one!