the Beginning: The Importance of Touch
My son Ben was born September 20, 1989. I remember
the first time I looked into his face shortly before he was
whisked away by the hospital nurse for the tests that newborns
are given. His left ear was bent temporarily from the position
he had been lying in for so long in the wombhis face looked
like it had been squeezed in an unnatural position. I touched
his face and knew he was happy to be bornhappy to be out
in the world with me. I could feel it in my own hand.
It wouldnt be too many hours after his birth that I would
be told the pupils of his eyes were whitevery dense "cataracts"
was the diagnosis. Years of many eye surgeries ensued commencing
from the day he turned two weeks old. Ben has worn contact lenses
from he was one month old. When he was 18 months old, Ben was
diagnosed as profoundly deafhe doesnt respond to
sound the way one would expect and his brain does not translate
sounds the way it should.
Ben was three years old when he got his first wheelchair, five
when he was placed in his stander for the first time, and six
when he made the first step in his walker. My son is deaf, blind,
developmentally and physically disabled.
From the time Ben was a newborn, instinctively his sister, who
is three years older, and I spent hours holding him and our
touch was never far away. When our absence was necessary, Ben
was never without a soft stuffed animal that was easy for him
to wrap his little fingers around. When he was only a few weeks
old, a pediatrician whose expertise was in the development of
children with visual impairments watched him in his stroller
and said, "I have never seen a baby have such a close bond
to a stuffed animal like Ben."
Ben has always had a real dog to play with ("tug-of-war"
is usually the favorite), a cat to hold while feeling the rumble
of its purr, and he is usually encouraged to reach out and feel
a tree before we pass it on a walk, and touch the flower while
smelling its scent. He is connected to the world he sees and
hears little of, because of touch.
Introduction to Manual Signs
Around the time Ben was three years old, our
family was advised to begin communicating with him by using
co-active sign languagewherein his hands where physically
guided to produce adapted signs from American Sign Language.
Bens interest and receptivity was remarkable and further
connected him to his surroundings and the people in them. An
instructional assistant whose background included knowledge
of sign language supported his receptive communication in school.
To better understand Bens different learning needs, this
assistant received regular training from his teacher credentialed
in the deaf and hard of hearing area, speech and language therapist
and teacher credentialed in visual impairment.
Since preschool Ben has been fully included in
the regular classroom of his neighborhood schools. His classmates
have been taught sign language and how to communicate with him
through the efforts of his educational team (teacher credentialed
in the deaf and hard of hearing area, instructional assistant
who signs, and other special education professionals). Today,
some of those children have become remarkably skilled in the
use of sign language and their experience will hold many rewards
in the building of accepting communities everywhere in the future.
Use of Sensory Cues
As Ben matured and around the time he was in
fourth grade, he was less interested in being touched intimately
by our hands in his, and he seemed to develop other ways to
understand his surroundings perhaps by using a combination
of his weak sense of hearing and sight, with a strong sense
of smell and feel. I can only watch, and it is a truly amazing
thing to observe if one spends the time. In the outdoors, Ben
guides the direction of his wheelchair by the warmth of the
sun, the shadows of the trees, the singing of the birds, and
the smell in the air. He is confident and connected to his world,
and I know why.
While his maturity would not allow a close personal touch, his
desire to know what goes on around him guided our understanding
that he desperately needed touch and tactile tools to receive
information and learn to communicate. Naturally, his family
and friends give him cues as to what is going to occur next.
For example, a simple tap on his shoulder to let him know that
its time to turn, presenting him his swim trunks to hold
five minutes before its time to go in the pool, giving
him the dog leash in his hands to understand we are going to
walk the dog, and so on. But this is not enough.
Importance of Proper Positioning
It is important to note that Bens ability
to reach out deteriorated significantly in the fifth and sixth
grades. Not because he couldnt learn, but in part because
his body had become larger, and his positioning in his wheelchair
was not adequate to hold him securely and enable the freedom
of his hands. Ben exerted a great deal of energy because his
seating was poor, and his dislocated hip caused him tremendous
pain that we were unaware of at the time.
With the repair of his hip, and months of working closely as
a team with his inclusion teacher, general education teachers
in junior high school, program supports, special educators,
occupational and physical therapists and others that know him
best, seating has improved, giving him the freedom to learn
with his hands once again.
Tactile Communication Cards
Since his body prevents him from forming accurate
signs with his hands, more formal forms of tactile communication
have been developed for Ben under the guidance of Project Salute
and June Downing at California State University, Northridge.
Handmade tactile communication cards are used consistently between
home and school representing a thing, a place, an event or a
person. Communication with Bens inclusion teacher is imperative
in making this work. The inclusion teacher often visits our
home; we spend time visiting for at least 20 minutes before
the beginning of each school day, and have regular contact via
email. Ben must be given time to feel the tactile card and either
feel or experience what it represents, repetitively, respectively,
and consistently throughout two days. Most importantly, his
body must be positioned in a place he feels securein his
wheelchair or lying down flat. Yet at times he gets annoyed
at the simplicity of the communication and finds entertainment
and great pleasure in pretending not to care; when we, his family
and teachers, care so much. He is after all a teenager and a
Today, Bens life is enveloped in opportunities
to touch, receive information and make choices. Typically, he
is not pushed randomly in his wheelchair without receiving a
verbal and touch cue as to the direction he will be headed,
and he is not expected to transition from one activity to another
without a tactile and verbal warning. Daily, he is presented
with choices tactilely and visually; such as, what clothes he
wants to wear or what he wants to eat first. Sometimes the choice
he makes is simply not to make a choice, but to watch and laugh
at the rest of us squirm and ponder our best approach or feel
anxious about the time. To me, this is a sign of self-determination
and I usually smile inside.
Bens family and teachers have an inherent respect that
he does learn, give him the proper time to process what is expected
of him, and he is presented tactile communication tools in a
consistent manner throughout all aspects of his life; then Bens
choices become clearer to everyone and his selections do not
seem just random.
Tactile communication tools are developed in
partnership with Bens educational team, therapists, and
me, his mom. We meet at school, talk over the phone, have regular
meetings, and brainstorm via email. Teamwork assures consistency
in the use and presentation of the tool.
The biggest challenge for us is being sensitive to what material
or design should be used in making the tools for Bens
optimum use and understanding. We must often ask ourselves this
important question, "Is this material or design identifiably
different by touch from others we have used?" Does the
rubber on one card that represents his wheelchair feel similar
to the material from his flotation device placed on the card
that represents swimming? This is hardour hands not as
sensitive as Bens even when our eyes are shut. We rely
upon the counsel of Ben's teacher credentialed in visual impairments
and Ben's reaction upon presentation.
There is little doubt in my mind that his communication will
one day burst out into the world for all to understand. The
quality of his future depends on it.