Parents Perspective: What I want from my Daughters
Patty Salcedo, M.A.
and our Family
My daughter just turned 19 years old. At age 16
she lost what little vision she had when her retina detached,
leaving her totally blind. Shoshanah was born with only one eye
and was quickly diagnosed with congenital glaucoma and macular
degeneration in that eye. Shoshanah has a mild hearing impairment,
cognitive delays, fine and gross motor problems (she uses a wheelchair),
and speech/language delays. She has a seizure disorder that has
intensified in adolescence.
Shoshanah loves to listen to music and her favorites include Puccini
operas and Cat Stevens. She has recently learned to operate her
CD player independently and search for favorite songs. She enjoys
playing Star Trek games with action figures (Counselor
Troi is her best friend). These make-believe friends allow her
to think out loud and get her through lonely times. They also
accompany her to her many medical appointments and seem to offer
a source of real comfortno "make believe" about
it. Shoshanah communicates verbally. Although her language and
articulation are poor, she loves to talk, sing, and listen to
her favorite TV shows: Star Trek and Jeopardy.
Shoshanah loves people. Cheering the antics of friends and family
is her favored role in group activities. She enjoys funny noises,
walks to the park, and assisting her classmates. Shoshanahs
teachers remark that she has never said anything negative about
anyone, and in fact, enjoys almost everyone she meets. She speaks
of her "girlfriends" and "her kids" and looks
forward to school as the opportunity to help others. She attends
a local high school where she is enrolled in a special day class
for students with orthopedic impairments. She is integrated into
general education one to two periods a day in courses such as
ceramics and choir.
Shoshanah lives at home with both of her parents. Her beloved
older sister is away at college. School vacations are a source
of celebration when the whole family can be together. During the
year, Shoshanah looks forward to weekly phone conversations with
her sister, and occasionally dictates an email. Extended family
lives in Southern California and chooses not to stay in close
contact, although Shoshanah loves to talk with them on the telephone.
Since the total loss of her vision three years
ago, Shoshanah has become more reliant on tactile strategies to
interact with her world. It has taken much of the past three years
to develop these strategies. At home, Shoshanah has learned to
identify tactile landmarks as she regains the confidence to move
about the house. She recognizes her bathroom, for example, by
the linoleum floor and the throw rugs. She has memorized the position
of her toothbrush holder and toothbrush. Independent toothbrushing
is one of her goals, and the teacher credentialed in visual impairments
(VI) has helped her locate the necessary items to brush her teeth
and wash and dry her face using touch.
Learning to carry out activities of daily living using tactile
strategies has become increasingly important. Shoshanah is learning
to sort laundry. She is not yet able to make fine tactile discriminations,
so she is working on differentiating socks by size. She enjoys
helping out in the kitchen, and as she has been working on concepts
of categorization, she now identifies a number of citrus fruits
through texture, shape, size, and smell.
Previously, Shoshannah read numerous large print sight words.
She has not been able to learn any braille, yet she still remembers
the shape of print letters. We have worked with the teacher (VI)
to develop a tactile labeling system for Shoshanah. We attach
a magnetic letter to materials such as each of her music CDs.
She can identify the beginning letter of the artists name,
and then locates the appropriate CD. For convenience, she is working
towards recognition of flatter letters such as those produced
from puffy paint. We are expanding the use of this identification
system at home and at school, labeling more of Shoshanahs
Materials are stored in containers of different shapes, and Shoshanah
has learned to associate the container with the contents. The
containers are made of different materials (plastic, metal, wood,
basketry) for added information and esthetic appeal.
The teacher (VI) developed a tactile version of the card game,
"Go Fish," one of Shoshanahs favorites. She uses
small foam shapes on a card rather than numbers, and she enjoys
playing this game at school with a classmate. Her Friday afternoon
card parties at school also include entertaining her friends.
Shoshanah sets the table by using trays and placemats to establish
her working area, and using the plate as a central point of reference.
As a place setting is completed, it is moved aside to make room
for another. In this way, Shoshanah does not need to move around
the table, a difficult task.
Making the transition to a more tactile approach to the world
has not been easy for Shoshanah. She learns slowly and she requires
much repetition. She relies on her well-established routines and
is hesitant to try new activities or methods of interaction. Many
of her current favorite activities began with intensive specialized
instruction and much cajoling.
Shoshanah has not demonstrated great sensitivity in her fingers.
She has always struggled with fine motor tasks, and her delayed
cognitive level challenges her ability to learn complex concepts.
Braille, then, does not seem like an effective communication medium
for Shoshanah. Rather, we work within the realm of what she can
perceive, discriminate, associate, and enjoy.
The educational team for Shoshanah is large. Her
primary special education teacher holds a credential in orthopedic
impairments. She is the contact for other team members. The teacher
credentialed in visual impairment works with Shoshanah daily.
She is responsible for helping Shoshanah develop compensatory
learning and daily living skills as well as informing other team
members of her learning style. The orientation and mobility instructor
assists Shoshanah map her world and locate the different activities
in her day, both within and outside of her classroom. The speech
and language pathologist works on Shoshanahs ability to
be understood. The inclusion specialist helps design successful,
integrated experiences on campus, and provides advocacy for Shoshanahs
abilities and right to participate in typical teenage activities.
The vocational specialist has helped to establish a work experience
(Shoshanah much enjoys filling bags at the local food bank. She
has also worked at the districts materials lab). Shoshanah
receives occupational therapy to assist her with daily living
skills and to address sensory integration goals. Until recently,
Shoshanah has received services from the school audiologist, the
behavior specialist, and the technology specialist.
My daughters unique constellation of challenges and strengths
does not suggest an educational placement that meets all of her
needs. Finding an appropriate placement is difficult. Some are
too generic and some focus solely on one disability. For example,
she has been enrolled in a class for students primarily with orthopedic
impairments. A team comprised of members with different expertise
is needed across all of her educational settings. I work and hope
for the following outcomes from the educational team:
A commitment to work together to develop and implement a cohesive
plan for Shoshanahnot to address her individual disabilities
in isolation. Working together includes supporting each other
as team members. We as parents appreciate transdisciplinary
thinking and the development of activities that support a
successful school day and increased quality of life at home.
2. A commitment to work from Shoshanahs strength, abilities,
and interests. This team is establishing the foundation for
Shoshanahs adult life activities, which we would we
like to be meaningful and satisfying. We want others to enjoy
her, and this requires structuring activities that encourage
3. A commitment to honest communication with us as parents
and amongst other team members. We need information as to
the successes or obstacles to IEP goals much more frequently
than annually. We as a family can support school activities
and Shoshanahs progress if we are informed. Similarly,
team members need to seek and value each others input.
4. A willingness to try something new and give an idea ample
time to succeed. Shoshanah does not learn quickly. Learning
through touch and limited hearing takes time, and she must
be provided much information and opportunities to experience.
5. Respect for our role as parents and for each other. We
as parents do not want to mediate personnel conflicts, nor
do we want educators squabbling for turf. We as parents do
not want to be feared as angry advocates or dismissed as unrealistic
or uninformed. We wish to be seen as individuals, and we expect
team members to view each other similarly.
6. Integrity as professionals and team members. We sign the
Individualized Education Program document in good faith that
the goals and objectives will be addressed. As we expect obstacles,
we also expect that they will be addressed so that the goals
can be modified for success.
of the biggest challenges for Shoshanah is the challenge to her
educational team: to look at life from her perspective, to believe
in her ability to learn, to think creatively, and to respect her
as an individual. When I am able to let go of my definitions of
quality of life, and examine what Shoshanah truly enjoys, I am
better able to assist her in creating her own quality of life.