MN DeafBlind

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FAMILIES

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, she is not “blind”.

Often times, a child may have very mild vision and hearing loss or have an impairment that only effects one eye or one ear. Of course, there are all types and degrees of vision and hearing loss in children who are DeafBlind.

Why use the term ďDeafblindnessĒ?

First of all, because in educational settings and later in rehabilitation settings the term ďdeafblindnessĒ 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 or vision loss. Deaf children rely on their vision to compensate for what they donít 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 with a vision loss.


Parent Road Map FREE to families calling: 800 848-4905

We usually try to make up for what he can’t see by 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.

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Deafblindness is greater than the sum of its parts.Photo of father & daughter

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 childís ability to access information and learn.

Itís OK to be uncomfortable with the term deafblindness.

Itís OK to be uncomfortable with the term deafblindness if it makes you feel awkward. However, please donít 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 canít get to the information because his eyes and ears donít work well, he canít learn.

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You are the most important advocates for your children.

Photo of father & sonFamilies 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 DeafBlind Project for more information on travel funding. Listed below are a variety of opportunities for families. Contact the Family Specialist for more information.

Family Internet Connection:

Families gain connection to the internet, E-mail and each other through a grant from the Hilton/Perkins Foundation. Minnesota parents give permission for their names and childís etiology and birth date to be listed on a family E-mail directory. Minnesota families can then contact each other for support and information. Internet Service Provider fees can be paid for through this grant.

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Family workshops and events:

A variety of workshops have been provided to families based on need and requests.
Examples include:

  • CHARGE Syndrome workshops
  • Family swim at the Courage Center
  • Dad's Night Out
  • Sign language classes for parents
  • Pump-it-Up Indoor Inflatable Park
  • Eagles Nest Indoor Park
  • Annual Family Picnic and Intervener Appreciation Day

† Email deanna.rothbauer@metroecsu.org to let us know your ideas for additional workshops and events.

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Moms Get Away Weekend:

An annual retreat held in various locations in Minnesota is available to mothers of children with a combined vision and hearing loss. For more information, contact the Family Specialist.

Project SPARKLE:

Are you unable to attend training workshops?
Project SPARKLE brings the deafblind specific training to you via DVD and Internet technology. Learning units include: Deafblindness, Hearing, Touch, Vision, Concept Development, and Intervention.

For more information, contact the Family Specialist.

Parent to Parent:

The Project Coordinator, Deanna Rothbauer, is mom to a 17 year old son who is DeafBlind. Parents are encouraged to connect with her at any time.† She can also arrange connections with parents whose children have the same etiology, the same age and/or the same additional disabilities.

Resource Lending Library

A library of materials is available to families and service providers. Materials are loaned for a period up to 12 weeks. For a listing, click here and call our office to request items. 1.612.638.1501.† A listing of our library is arranged in categories, ie: ears, eyes, early childhood, transition, CHARGE syndrome, etc.

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How did the DeafBlind Project come to be?

Following the Rubella epidemic of the 1960ís, the federal government learned from parents and educators of these children and young adults that most people (even educational professionals) do not understand that combined vision and hearing loss creates some unique challenges to learning. The Department of Education set aside special funds to help families, professionals and paraprofessionals with that problem. Initially, these funds were used to run special schools for children with deafblindness, but now they are used to help train local service providers to be able to work with the child in his home community through offices like the Minnesota DeafBlind Project. These funds are available to each state. They are used to provide training and support to the families of these children and the professionals working with them. This is needed so the parents, professionals, and paraprofessionals can learn how to help children access learning and needed supports.

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