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Family Engagement Coordinator Scarf Journey

In July 2016, NCDB hosted a workshop for state deaf-blind project family engagement coordinators. For many attendees, it was their first time to meet in person. As an icebreaker activity we used a ball of yarn and tossed it across the circle of participants to allow everyone to introduce themselves. Each time someone tossed the yarn, they held onto of a section of the string, thus creating a large web. The web then became a symbol of the support they provide to one another, as well as the support they give to families in their states. After the training, a young woman from Texas, with combined vision and hearing loss, took the string and wove it into a scarf. Now the scarf is taking a trip around the nation so family engagement coordinators can take it to events and activities. Why are we doing this? So that over time we can meet the wonderful people serving in this vital role and learn about the array of activities and support they provide to families in their states. Follow the scarf by reading the stories below. We hope you enjoy them.

Hashtag: #FamilyEngagementCoordinatorScarf

A circle of Family Engagement Coordinators all holding a piece of yarn creating a web.
Group of FECs stand together for a photo.

September 2019 - Tennessee

Families and professionals from Tennessee, Kentucky, and South Carolina met in Knoxville to attend a literacy training by Gwyneth McCormack of Positive Eye.  Participants learned about how to make literacy accessible and enjoyable for all children.  The training included a performance of Gwyn's book, Marvin's Market Adventure and Grandma's Special Birthday Picnic, strategies for working complex learners, exposure to materials and ideas to expand literacy concepts, and a make-and-take for two different books!  It was a fantastic weekend of learning and connecting!

April 2019 - Wisconsin

An exciting day of learning, networking, and fun was planned for the last weekend of April. Zip Lining with the experts at Lake Geneva Canopy Tours for those who wish to participate, hiking trails, games and a bouncy house for those who chose to keep their feet on the ground was all on the agenda. But Mother Nature had other plans. It was a beautiful day to remind myself why it is good to stay inside.

Weather in Wisconsin is not always predictable with a Winter Storm Warning and nothing but snow, wind and cold to greet us that day. But as they say, the show must go on...our guest speaker Margaret Gilbride, led us in an honest and candid conversation about the power of parental expertise and its role in informing the work of professionals in their children’s lives. The time together was part celebration, part visioning and part strategizing. Despite the weather a good time was had by all!

Group photo of FECs and families.
Group photo with scarf and silly glasses.

March 2019 - Missouri

Hello from Missouri.  We enjoyed the NCDB colorful scarf with all the cool pins from various parts of North America, at our March 2019 VIISA Training.  The VIISA Project is from the SKI Hi Institute at Utah State University.  The VIISA Project provides resources for family centered interventions for infants, toddlers and preschoolers who are visually impaired.  Through the training, participants obtain lots of relevant and useful information, including hands on resources for working with children who are visually impaired and with additional disabilities, including deafblind.  The VIISA participants from across the state, just as the NCDB FECs from across the country, all learned from and collaborated with each other, and truly enjoyed coming together while learning.  The scarf added nicely to our training and was a wonderful way for us to celebrate our accomplishments. 

February 2019 - Texas for DB Summit

At the 2019 Deaf-Blind Summit, several Family Engagement Coordinators were able to be together to learn and share.  If you are a family member of an individual with deaf-blindness and you have not met the person serving in this role for your state deaf-blind project, you need to make sure to connect with them!  These remarkable individuals work very hard to support the needs of families in their state and are eager to meet you.

Collection of photos of FECs with the scarf.
FECs taking a picture with Santa while holding the scarf.

December 2018 - New York

Silvia Verga, Suzanne Chen and some of the NYDBC Parent leaders with Santa. All children received a gift from Santa who happens to be deaf-blind; professional family photos were taken by one of our Parent advisors who is a professional photographer. CHARGE Foundation, NFADB, HKNC, ICC were represented. A huge thanks to NYPADB for collaborating with NYDBC to make this event a wonderful experience for the families.


November 2018 - New York

The New York Deaf-Blind Collaborative held a Family Leaders Planning Event on November 28, 2018 in Buffalo, NY. On the agenda was an overview of NYDBC Family & Consumer Engagement Initiative (F&CE) plans, an opportunity for shared group discussion, and Shannon McCracken provided an overview of Parent to Parent of New York State's Health Care Notebook. Looks like a fun and productive time! 

Group photos of FECs with the scarf and collaborating together.
Collage of photos of FECS in front of a WA map, doing a string activity, and standing with the scarf.

September 2018 - Washington

WA Deaf-Blind Project staff and parent volunteers hosted our 2018 parent networking event “Dreaming for Our Children’s Future,” in Leavenworth, Washington from June 27-28.

As an opening, we shared the traveling scarf story. Sarah Godwin, a transition consultant, led us in the “we-are-all-connected” yarn activity for parents to introduce themselves. We had a map of Washington State, which is seen behind the group with the scarf draped over the top. Washington’s pins are included, now! 

Evaluations showed that parents want more ways to connect and some wished the event could have been longer. Two major points/resources that family members said stood out for them: 

Self-determination skills for my son, and giving him the opportunities to better express his wants and needs. 
Helped me know what questions to ask.
That the little choices of self-determination lead to bigger ones. 
The power of networking.

April 2018 - Deaf-Blind Summit

In April 2018, the state deaf-blind projects and NCDB gathered to talk about next steps in enhancing services for individuals with deaf-blindness at DB Summit and then went right into the first-ever Network of the Americas Conference, hosted by Deafblind International and Perkins School for the Blind. The conference was a great opportunity to network, learn and have fun with leaders in the field of deaf-blindness from North America, Central America, South America and the Caribbean.    

Collage of FECs with the scarf.