Thriving Through Connections

NOTE: May is Better Hearing and Speech Month

Jaxson and Donia

By Donia Shirley, Vice President of the National Family Association for Deaf-Blind and parent of Jaxson, a child who is deaf-blind.

When a baby is added to a family, invisible bonds often quickly form with others who have children the same age. For families who have children with complex support needs, that community can seem out of reach, especially when they have a child with a low incidence disability such as deaf-blindness.

A few days after our 6-week-old son Jaxson was transferred to our local children’s hospital, we started receiving diagnoses. We learned he was deaf-blind; he was profoundly Deaf and had colobomas (an eye condition that cannot be completely corrected). The medical team eventually informed us that Jaxson had CHARGE Syndrome.

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She Will Never…

Note: May is Better Hearing and Speech Month.

Rene Averitt-Sanzone

Rene Averitt-Sanzone
Executive Director
Parents’ Place of Maryland

Those were the words I heard over and over again when my oldest child was born 27 years ago. She will never read past a third grade reading level; she can only hope for a menial or labor-oriented job; this is the best her writing will ever be so maybe you should just accept it, maybe you are in denial. Sound familiar? I am sure that I am not alone as a mom. Many of us have heard these words from well-meaning and well-intended professionals who are only trying to help.

In July of 1990, I gave birth to a very healthy and beautiful baby girl, Laurin. I mean, she was adorable (seriously, picture the Gerber baby. That was Laurin.). She seemed to be doing everything ahead of the developmental milestones: crawling, sitting up, etc. But then, on Christmas when Laurin was five months old, my sister came to me and said, “I just tripped and knocked over some pots and pans behind Laurin and she didn’t startle.”

It is safe to say that this single moment radically changed my world.

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“Voices from the Field” Interview with Will Eiserman, ECHO Initiative

Will Eiserman with a back pack in the woods

Will Eiserman, Director, Early Childhood Hearing Outreach (ECHO) Initiative at Utah State University.

Will Eiserman is the Director of the Early Childhood Hearing Outreach (ECHO) Initiative, at the National Center for Hearing Assessment and Management, Utah State University. As Director of the ECHO Initiative, he has led a national effort to assist Early, Migrant, and American Indian/Alaska Native Head Start programs in updating their hearing screening and follow-up practices. Working in close collaboration with a team of pediatric audiologists and other Early Hearing and Detection Initiative (EHDI) experts, Eiserman has been responsible for the design of training systems, mechanisms for tracking and follow-up, and evaluation strategies associated with early and continuous hearing screening activities. His career has focused on a variety of efforts to improve early intervention systems for children with special needs, and on meeting the psycho-social needs of children with craniofacial disfigurements and their families. Eiserman’s perspective is influenced by his extensive international and cross-cultural experiences that include work in Ecuador, Vietnam, Costa Rica, Russia, and Indonesia.

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Will Eiserman
Posted by
Director, Early Childhood Hearing Outreach (ECHO) Initiative, National Center for Hearing Assessment and Management, Utah State University

Interveners and Children Who are Deaf-Blind

Technology, supports and services for children who are deaf-blind have come a long way since Helen Keller first responded to Anne Sullivan’s efforts to help her learn.

The importance of intervener services today for many children who are deaf-blind children cannot be overstated. The National Center on Deaf-Blindness (NCDB) defines this service as providing access to information and communication and facilitating the development of social and emotional well-being for children who are deaf-blind.

In educational environments, intervener services are provided by an individual, typically a paraeducator, who has received specialized training in deaf-blindness and the process of intervention. An intervener provides consistent one-to-one support to a student who is deaf-blind (age three through 21) throughout the instructional day.

The NCDB is funded by OSERS’ Office of Special Education Programs (OSEP) as a national technical assistance center to improve the quality of life and educational opportunities for the roughly 10,000 children who are deaf-blind. Deaf-blindness is a low incidence disability and within this population of children there is great variability. Ninety percent of children who are identified as deaf-blind have additional physical, medical and/or cognitive disabilities. Without supports, these children are cut off from most, if not all, communication and activities in their environments. Thus, it is clear that many of these children can, and do, benefit from services offered by trained interveners.

Because we recognize that parents are best able to describe their child’s educational experience, consider these comments from parents of children who are deaf-blind who have written to express their thoughts about what happens when their child has an intervener:

“My child’s educational experience over the past four years has been exceptional with the expertise and training his intervener has provided. An intervener is specially trained to work with my son who is deaf-blind. Their ability to engage my child in activities and learning as well as connect them with their peers and teachers is simply a necessity to my child’s education. My son feels included, appreciated and ABLE; thanks to the support and encouragement his intervener adds to his education. Without her, he would be lost.”

Jackie Bauer

“When we were told our child was deaf-blind, we had no idea what to do. We didn’t know if we would ever be able to communicate with her or if she would be able to let us know what she needed. Her interveners have taught us how to talk to our daughter. They have given us and her, the tools we needed to interact. They are her bridge to the world and I’m so thankful every day that she has people who support her learning and help the world learn about her. Through interveners I have come to know my daughter better and know better how to do with her, not for her or to her. If you have chosen this career, you are a very special person and through hard work and believing in your student, you will make a deeply felt difference in not only the life of the person you intervene for, but the lives of everyone that person touches.”

Emily Gold

“Our son Matthew has had an intervener in the school system and community for a number of years. The benefits from having this highly trained support person have been enormous. I believe the intervener is an ambassador for our son—modifying his school projects to make them fit his needs, being his eyes and ears when he is in an environment and needs assistance understanding what is around him, enabling social connections and doing all these without being too present in his area. The intervener has the knowledge of how to do the job but not do the job for the person they are working with. Matthew would not benefit from having someone do everything for him but doing just enough that he can participate to the fullest in each one of his daily settings. Many, many teachers have commented to me what a valuable resource Matthew’s intervener has been to them.”

Michele Pedersen

“Having interveners in my sons life has made a drastic change in his education and his daily living. He is finally able to communicate with others around him, which has helped him not only in his education, but in his daily living. Imagine trying to learn when you can’t hear and have difficulty seeing. Interveners bring it all together. They provide the light in a dark world and sound in the silence. Best thing to happen with his education ever! They are absolutely AMAZING!”

Hatti Edwards

“When Anna didn’t have a full time intervener at school she would get frustrated to the point of not being able to finish the school day and a parent would have to go pick her up. It was very frustrating for Anna, school staff and her parents. Anna has had a full time intervener for the last 4 years she is able to finish every school day and her outbursts are seldom and don’t last as long. Her intervener helps her stay on task and not get or feel lost or left out during school. Without her intervener she would not be able to handle the different transitions that take place during a full school week. As parents, we feel very grateful for this service.”

Greg and Beth Volkers


Posted by
OSERS Project Officer—National Center on Deaf-Blindness and several State Deaf-Blind Technical Assistance Project.