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Parents' Perspectives on . . . Behavior, Communication & Instructional
On July 30 - August 1, 1998, eighty parents and family members from across
the country attended the national workshop "Going for the BEST: Building
Excellence and Strength Together" in St. Louis, Missouri sponsored by
the National Technical Assistance Consortium for Children and Young Adults
with Deaf-Blindness (NTAC) and the National Family Association for Deaf-Blind
(NFADB). The children of these 80 individuals represented the full diversity
found in the deafblind population, as well as an age range from infant to young
adult. The goal of the workshop was to generate a list of what the participants
identified as the most important practices to parents in the areas of behavioral
issues, communication, and instructional strategies in the education of their
child who is deafblind.
Linda Carter, Keith Fansler, Sareth Garcia, Patricia McCallum, and Alison
Rickerl are the parents from Texas who attended the St. Louis conference. Kate
Moss from Texas Deafblind Outreach, and C. C. Davis, the Helen Keller National
Center Regional Representative for Texas, also participated. We all greatly
benefitted from our involvement, although we were sometimes uncomfortable with
the process, since this workshop was about the parents instructing the professionals
instead of the professionals instructing the parents. It was also about parents
teaching each other about their child's unique needs and learning how those
needs were frequently the same and yet sometimes differed from another child
In a large general session, Jerry Petroff (with help from a variety of staff
from NFADB, NTAC, HKNC, and state deafblind projects) took the parents through
a process of brainstorming the critical practices, from their perspectives,
related to communication, behavior, and instruction. Then, through a series
of smaller group activities, this list of practices was refined and ultimately
prioritized by the entire group. There were many interesting discussions throughout
the weekend. Parents representing older individuals, babies, children with
additional disabilities, children who used ASL, individuals from minority cultures,
each brought up issues from their unique perspectives. Persuasive arguments
were made in favor of a particular wording. Everyone worked hard to listen
openly to what each person offered to the discussion, to really "hear" each
other. The sharing was tremendous. The final document contains only a portion
of all the ideas that were put forth by the group. It does serve, however,
as a valuable guide to the issues families want addressed by professionals
in the field of deafblindness, education and rehabilitation, and the community
Keith Fansler from Amarillo, Texas shared these thoughts about the gathering: "I
always come away from these workshops and conferences with a lot of new ideas
and information, sometimes it is an overwhelming amount. Parents always pull
together, energizing each other to share their beliefs and concerns. One thing
I have come to realize is that we all come from many different backgrounds
and have many unique challenges, even though all of our children have some
type of deafblindness. As I hear parents expressing their concerns, I start
thinking how we all have the same common goal: the best education and jobs,
heck, the best life that this world has to offer our specially challenged children.
We are not different from any parent all over this great nation and around
the world. We all want the best for our children; however, sometimes I think
we try to impose what is best for our own child onto other children. We need
to step back and hear where families are coming from sometimes. We need to
make sure they feel heard, then honor and respect their beliefs."
What follows is the list of those practices developed by the parents in St.
Parents' Perspectives on . . . Important Practices in Communication
- Families and professionals need to gain an understanding of various communication
techniques, strategies and modes in order to give the child an individualized
and appropriate communication system that reflects the child's assessed needs
and respects the family's choice. Children should be provided with multiple
communication approaches including total communication, sign language, pictures
and augmentative communication methods in both home and school environments.
- Teachers and service providers must understand that all behavior has a
communicative function and should not be a "problem." Individuals
who are deafblind should have the opportunity to express their needs and
frustrations without being judged.
- Each individual who is deafblind should be provided a communication facilitator
(certified interpreter, trained intervener, teacher assistant, etc.).
- Training should be provided to ensure that a variety of people are able
to communicate with the child.
- Children and adults who are deafblind should be given the right to communicate
and be "listened to" with adequate time to respond.
- Children and adults who are deafblind should be provided with the necessary
tools to encourage acceptance into his or her preferred community (i.e.,
deaf community or other appropriate communities).
- Individuals who are deafblind should be provided the opportunities to succeed,
take risks and even fail.
- American Sign Language should be offered as a foreign/second language in
school and community settings.
- Communities and businesses should provide access to communication (in a
variety of modalities).
- Professionals and paraprofessionals should be appropriately trained and
required to maintain high standards of practice.
Important Practices in Instructional Strategies and Program Development
- A range of housing, supported living, supported and independent work, community,
recreation and social options should be available.
- Expectations for the child should not be underestimated. Give the child
opportunities to succeed, take risks and even fail in an environment of security,
affection, and love. Focus instruction on the strengths of the individual
with expectations for success.
- Provide activities that are age appropriate and meet the child's needs.
- Parents should be provided with training which enables them to be advocates
for their child (i.e., teaching strategies, futures planning, legislation,
how to understand the planning process, etc.).
- Families and service providers need to be able to teach advocacy skills
to the child. The process should continue over a lifetime.
- It is important for the individual who is deafblind to have a place in
his or her community with access to a full spectrum of life experiences.
- There should be increased community awareness and choices for persons who
are deafblind (i.e., social opportunities).
- Provisions for a continuum of life-long services. Provide continued and
non-interrupted services needed throughout the life of the deafblind individual.
- It is important for local and state community services to be mandated and
funded for deafblind youth and adults.
- The deafblind individual must be a valued member of a community that affords
him or her a full spectrum of accessible life experiences.
Important Practices In Positive Behavior Strategies
- Behavior is a communicative function that must be understood and acknowledged
- Individuals with deafblindness have unique needs that must be met. Their
individual likes, dislikes and personality must be respected.
- All service providers, including those in the mental health field, need
comprehensive training about the uniqueness of deafblindness and its impact
on behavior. A range of services must also be available.
- All persons who interact with the deafblind individual must understand
the impact of deafblindness on life.
- All deafblind youth and young adults need to be prepared and trained in
self-advocacy and leadership.
- All parents of deafblind children need networking opportunities to share
information on behavioral issues in order to learn new ideas and strategies.
- Service providers and others should know appropriate, current, and positive
behavior strategies and supports.
- It is important to provide the individual who is deafblind with a sense
of security, affection, love and patience.
- Encourage self-advocacy from an early age, focusing on the person first,
not the disability.
- Members of a team and other service providers working with the individual
who is deafblind must understand that medical issues/medication can impact
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