Coming to Terms with Deafblindness

Deafblind is a difficult term to come to grips with. Very few children are totally deaf and totally blind. So for many, it means a child who has combined vision and hearing impairments. In order to qualify as deafblind, those combined losses have to be significant enough to require adaptations or supports – things that children without the vision and hearing loss would not need to be successful. Like most disabilities, deafblindness varies from individual to individual. No matter what degree of the deafblindness, our kids require a unique approach to learning that involves different ways of accessing information.

The Intervener website has many useful resources, including an easy-to-read overview on Deafblindness. Other resources to be found on this site include simulation videos for a range vision and hearing loss, and an informative article, “What is Deafblindness”.

Your child has an extremely low-incidence disability

An important thing to note is that deafblindness is not a topic that most teachers, even in special education, learn very much about. Deafblindness in the lowest of “low incidence” disabilities. In Oregon, only13 children (3-21 years) are currently listed with deafblindness as the primary disability on their IEP (Individualized Education Plan) compared to 999 listed as deaf or hard of hearing and 385 as visually impaired/blind. Because of this, you need to be your child’s best advocate!

You are not alone!

Although you may feel isolated at the beginning of this journey, know that you are not alone! There are other parents, medical professionals and educators available to help you on this journey. A great place to start in your search is the Oregon Deafblind Project. This is a federally funded project that provides free assistance and training to families, service providers, schools and agencies involved with children, birth through 21.