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.
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. 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 children!
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.
Family workshops and events:
A variety of workshops have been provided to our families to provide support and education for their children. Examples include:
- Mom’s Retreat
- Parent Summit
- Teen Getaway Weekend
- Tips & Tools
Parent to Parent:
Our WDBTAP Family Specialist Jodi Anderson is mom to son Liam 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, are the same age and/or have the same additional disabilities.
Resource Lending Library
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 children and young adults who had combined vision and hearing loss and the unique challenges they had 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 deaf-blindness, but now they are used to help train local service providers to be able to work with these children in their home communities through offices like the Wisconsin 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 these children access learning and needed supports.