Is My Child Really DeafBlind?
As a parent, the term, DeafBlind, may be difficult to hear, and it may not seem to really describe your child’s disability. You may be thinking, “My child is deaf, but she can still see, so she is not ‘blind’.” Oftentimes, a child may have mild vision and hearing loss or have an impairment that only affects one eye or one ear. Of course, there are all types and degrees of vision and hearing loss in children who are DeafBlind.
Why Should We Use the Term DeafBlindness?
First of all, because in educational settings and later in rehabilitation settings, the term “deafblindness” is used to talk about a specific disability. It describes any combined vision and hearing losses that are significant enough to require special modifications or supports - things that go beyond what would typically be needed if a child just had a hearing loss or a vision loss. Deaf children rely on their vision to compensate for what they don’t hear. We use sign language or cued speech, pictures, and other visual methods to help them get the information. It is a similar situation for a child who has low vision or is blind. We usually try to make up for what he can’t see by talking with him and telling him about things. He uses his hearing to know when a car is coming, to listen to books on tape, to read a computer screen and so forth. If a child has combined vision and hearing loss, some of these methods don’t work very well. He needs more.
DeafBlindness Is Greater Than the Sum of Its Parts
DeafBlindness sounds pretty dramatic, but it also seems to describe the reality of combined hearing and vision loss. Think of a world where 1+1 does not equal 2, but instead equals 10. Missing a little bit of what can be seen and a little bit of what can be heard often means missing a whole lot of what is going on in the world. Additionally, missing information causes misunderstanding which causes big problems. It is important for us to realize that without the proper modifications and support, even a mild vision and hearing loss has a dramatic impact on a child’s ability to access information and learn.
It’s Okay to Be Uncomfortable with the Term DeafBlindness
It’s okay to be uncomfortable with the term DeafBlindness if it makes you feel awkward. However, please don’t be afraid to use that term either, especially if it helps people understand that your child has some very special needs. Educators, service providers, community members and others need to understand that with a little extra effort, they can make the world accessible to your child with deafblindness. Without these accommodations, your child is denied access. Just like a child in a wheelchair who needs a ramp to enter the school building, if your child can’t get to the information because his eyes and ears don’t work well, he can’t learn.
You Are the Most Important Advocates for Your Child
Families need to be involved for their child to have a successful education. We feel that families are an integral part of the IEP and IFSP team. In order for parents to be successful advocates for their children, information and training must be available to them. Family workshops and training are held throughout the year on a variety of topics. In addition, limited funds are available for travel to out-of-town conferences. Please contact the Minnesota DeafBlind Project Family Engagement Coordinator for more information.