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NEW! Parent Road Map: publication date May, 2008. 
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 “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 or 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 with a vision loss. 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.
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
OK to be uncomfortable with the term deafblindness. It’s
OK 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. Back
to top You are the most important advocates for your
children. 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 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 child’s 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. Back to top 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
All professional workshops
are open to family members. 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 at mndb@skypoint.com Project
SPARKLE: Are you unable to attend training workshops?
Project SPARKLE brings the DB 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 at mndb@skypoint.com
Parent
to Parent:
The Project Coordinator, Sally
Prouty, is mom to a 27 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. 1.612.638.1530. A listing of our library
is arranged in categories, ie: ears, eyes, early childhood, transition, CHARGE
Syndrome, etc. Back to
top How did the DeafBlind Project come to be?
Following
the Rubella epidemic of the 1960’s, 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 Technical Assistance 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. Back
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