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A Publication about Visual Impairments and Deafblindness for Families and Professionals

By Molly Roberts, Texas Chargers Board Member, and Becky Harmon, DBMAT Secretary

Abstract: Two Texas family leaders share their experience at the first Deafblind International Network of the Americas Conference held in Hyannis, Massachusetts April 15-18, 2018

Keywords: Family Wisdom, DeafBlind, Texas family leadership, Deafblind International, Perkins School for the Blind

Editor’s Introduction

In April, DeafBlind individuals, family members, and professionals from across the Americas and globe descended on the beautiful Cape Cod town of Hyannis for the first-ever Network of the Americas Conference. This extraordinary event was hosted by Deafblind International (DbI) and Perkins School for the Blind with support from the National Family Association of Deaf-Blind and the Cape Cod Chamber of Commerce. The theme, Partnerships for lifelong learning was lived out during our week together with the introduction within the conference program capturing the experience perfectly.
We’re all stronger when we work together. By partnering as educators, service providers, consumers, policymakers, advocates and family members, together we can offer a lifelong array of support for the deafblind community – spanning from early intervention and K-12 education to programs, services and products for adults.

The conference was dedicated to Dr. Jan van Dijk with these poignant reflections,
Dr. Jan van Dijk, who, by example, inspired us to truly seek to understand children with deafblindness. He was a masterful teacher who never failed to magically capture the interests of the children and engage with them in meaningful communication.

Of the 400 plus participants, there were numerous self-advocates, family members and professionals from Texas. Many Texans were there in leadership roles by serving as keynote speakers, breakout presenters, and representing various organizations. Following are reflections from two Texas family leaders who helped make Texas shine bright on an international stage.

Molly’s Reflections

The theme of the first ever DeafBlind International (DBI) Conference was Partnerships for Lifelong Learning. The conference took place April 15-18, 2018 in Cape Cod, Massachusetts. It had an impressive representation of people from all over the world including state DeafBlind projects, organizations for families, educators, parents and individuals with DeafBlindness.

I had the opportunity to attend the DBI conference in two capacities, board member of Texas Chargers, Inc. and as a parent of a child who is DeafBlind. This allowed me to seek out a range of topics that applied to my particular child and those that might apply to families I encounter on a regular basis.

The experience, knowledge, and resources present were incredible. It made it difficult to choose which session to attend yet reassuring that each one would be beneficial. Topics ranged from infancy to adulthood, functional to academic skills, transition services, vocational training, parent support and many more.

While there, many conversations were started about educating our communities for the benefit of people with DeafBlindness. My own community increased tenfold from new connections with other parents, professionals and organizations. I then returned home, energized by the people I met and the information shared, poised to help build a bolder future for those with DeafBlindness.

I am so grateful for the opportunity to attend the DBI conference. Also, I am excited to say that once back home those conversations were continued and we have already started educating our immediate community.

I am always amazed by how the common thread of DeafBlindness binds people together as if we were family. Where all people say, “of course”, in the pursuit of an authentic connection for those who are DeafBlind. The people I met at the DBI conference, the connections I made, and the resources I returned home with are priceless.

Three women smiling at the camera.

Four women smiling at the camera.

Three women standing on a beach and smiling at the camera.

Becky’s Reflections

I had a wonderful experience attending the DbI Network of the Americas Conference as a NFADB scholarship recipient. I met so many DeafBlind parents as well as other family members and professionals who work with DeafBlind individuals from all over the world. Just to name a few…several from different parts of Africa, Norway, Australia, as well as Vermont, New Jersey, New York, Massachusetts, Utah, Oklahoma, and of course, Texas where I’m from.

There were so many of us from Texas. Most people were probably thinking they were invaded by us all! However, I believe people from Texas have a wonderful reputation of making issues of DeafBlindness important within our state. We are a very large state with over 700 DeafBlind individuals identified. We have the Texas School for the Blind and Visually Impaired that has ever changing ideas in the field of DeafBlindness, including an Outreach Program that works with parents and other organizations and professionals to increase awareness of issues.

Two women holding up photo booth masks and lips to their faces.

Then we have an organization, DBMAT (DeafBlind with Multiple Disabilities Association of Texas), made up mostly of parents that work to legislate for the rights of their DeafBlind children, including the important issue of Interveners so that their children will have a connection to the world they live in.

Yes, I have to admit, I’m a little proud to be from Texas. Especially when I sat in and listened to the different sessions. The one that stands out the most was with Robbie Blaha and Matt Schultz. Robbie explained her history with the DeafBlind beginning with the Congenital Rubella Syndrome epidemic and how she realized she would have to change the way she was teaching these unique children and how she had to adapt to their individual ever changing needs. Matt and Robbie stressed how the needs of DeafBlind individuals are still changing and professionals need to communicate together to come up with new ideas. They recommended a forum for professionals to come together and discuss how DeafBlind issues need to be addressed for each student since they now need to be more fine-tuned, so to speak, because they are very different from the Rubella cases in the beginning. There are specific challenges finding what each child needs and professionals must be aware and able to advocate for more specific IEP's. Yes, I know there were other sessions but this one made me really proud to be from Texas while at Hyannis, Massachusetts.

Group photo of some DBMAT members.