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By Erika Anderson
Staff Writer
MARIETTA—Like a lot of children making a first confession, Will Taylor
practiced with his parents beforehand. While some children have to conquer
their nervousnes when entering the confessional for the first time, finding a
way for Will, who is physically disabled, to communicate to the priest, proved
to be most challenging.
As the mother of an eight-year-old son with severe disabilities, Gigi Taylor
was accustomed to overcoming challenges. When Will was born in 1991, he became
very sick in the hospital and his parents knew right away that he was not a
typical baby.
“The way his body moved was really different, and it was challenging
for him to communicate in the way a normal baby would, with coos and gestures
and normal baby babbling,” Taylor said.
Will was diagnosed with hypoxic ischemic encephaolopathy, a neurological
condition which allows little function of his arms and legs. He also has visual
difficulties and is nonverbal. At the age of two-and-a- half, the Taylors began
assessing Will’s abilities with the help of many specialists and a life
planner, who helped the family prepare for Will’s life at ages 10, 20,
even 40. They then began the almost daunting task of putting together
augmentative and alternative communication devices for Will.
“If you have a plan of action in front of you, it keeps you moving and
you just have to make sure that the action is part of the will of God for you
and your family,” Taylor said.
Relying on Will’s great ability to hear, the technology uses auditory
scanning. Confined to a specialized wheelchair, Will hears auditory cues that
prompt him to choose what he wants to say. He then hits a switch by his head,
or uses a yes-no switch that is on the arms of the wheelchair. A
“talker” that Will can access at the push of a button speaks for him
in a digitized and synthesized voice.
“We have to use whatever tools (are available) to make Will the most
functional little boy he can be,” Taylor said. “You have to trust so
much and you have to have so much faith.”
In 1995 the Taylors moved from their three-story Buckhead home into a
wheelchair-accessible home in Marietta that they built from the ground up.
Overlooking a lake, the Taylors’ home took two years of planning, and
Taylor said they are constantly reassessing the home as Will grows.
When Will turned 5, Taylor and her husband, Doug, were ready for another
milestone in Will’s life—school.
“It’s always been really important to Doug and me to have Will be
around typical kids, so when Will turned 5, I was just totally ready to have
him in school,” she said.
So Taylor approached the Church of St. Ann’s preschool, hoping that
they would accept Will.
“I went to St. Ann and I took a video of Will, because you know,
Will’s pretty scary,” the mother said with a twinkle in her eye.
The teachers at the preschool accepted Will with open arms, with the
stipulation that Taylor attend school with her son.
“I went to school with Will everyday and I learned my preschool lessons
all over,” she said. “I remember the incredible development that took
place. He was so alive with those children. That was a turning point for
us.”
Will has a face that visibly lights up at the sound of his mother’s
energetic voice or the music he hears at church or the mention of going outside
for a walk. But the thing Will loves the most, his mother said, is simply
one-on-one conversation, and he received that at preschool.
“All those kids remember Will and speak to him,” his mother said.
“It’s just so marvelous.”
Will now receives home-schooling from a caregiver, but it was important to
the Taylors that their son take the faith journey of a typical child. So in
addition to praying at home, Will was enrolled in the parish school of religion
program at St. Ann.
The second grade is a big year for all children and Will was no exception.
Taylor wanted her child to receive the same sacraments as all the children in
his class. The trick was finding the right way.
At a meeting for parents regarding the sacrament of penance, Taylor became
worried that it might not be possible for her son to make his first confession.
The person leading the meeting told the parents that the sacrament had changed
a lot over the years and that it had become more of a dialogue between the
person and the priest.
“I must have heard the word dialogue a hundred times. I thought,
‘How am I going to do this? How?’” Taylor said. “I
completely fell apart, right there in the pew.”
But Will’s teachers, Larry Holt and Marietta Murphy, as well as other
PSR directors, encouraged the Taylors not to lose hope. Taylor began
researching ways to make reception of the sacrament possible.
“We have always been extremely pro-active in researching new
technology,” she said .
Taylor found a device called a “Step by Step,” which would allow
another person to record a sequence of dialogue that Will could access by
hitting a yellow button.
With her son, Taylor read an examination of conscience provided by PSR. She
placed a checklist in front of Will, and with her help, he made a large mark if
that was a sin he wanted to confess. His older sister then recorded the
dialogue on the “Step by Step.”
Taylor knew that the priests would need additional instruction about
Will’s first confession and was nervous about how Father Bob Susann, MS,
pastor of St. Ann, would react. She told Father Susann that she had prepared a
script for the priest and that Will would respond using the “Step by
Step” recorder.
“I was feeling very hopeful that Father Bob would be accepting and he
was,” Taylor said. “Actually, he was more than just accepting, he was
kind of cool about it. I left there just as happy as could be.”
January 11, 2000, was Will’s big day. He and his family had practiced
and his mother was pleased that he could hit the button to communicate when he
was supposed to. However, when the time came to face Father Susann, Will
didn’t hit the button to start his pre-recorded confession, and Father
Susann did it for him. Taylor was crushed.
“I don’t know why, but it was important to me that Father Bob know
that Will could do it on his own,” she said.
Comforted by Will’s PSR teachers who told her that Will was like many
children who get nervous during their first confession, Taylor made a videotape
of Will pushing the button and sent it to Father Susann.
As one of Will’s teachers in PSR, Murphy said that teaching Will was a
unique experience.
“Before Will, I was deathly afraid and had no competence in handling
someone with a physical handicap,” she said. “Will has certainly
educated me in a very positive way.”
Taylor said that she hopes her son will continue to educate. “I know
that we are being observed,” she said. “I know that Will is a teacher
and we as a family are teachers of how it can be done.”
Taylor also hopes to teach other children with disabilities. She has founded
a school called Links, the Georgia Computer Language School Incorporated, to
teach children how to learn through assistive technology.
“Through technology, no matter how severe the disability, there are
ways to function within the community and we strive for that with Will. We
strive to have Will be whatever he can be.”
Taylor said that she has been given a unique gift as Will’s mother.
“God gave me the ability I have to uncover the ability that Will
has,” she said. “Another added blessing is the openness of Father Bob
and his staff. Catholicism is universal; it is encompassing of everyone from
all walks of life.”
The Taylors attend Mass each Sunday as a family. The parents hold their son
in a standing position while the rest of the congregation stands and he sits
while the rest of the congregation sits because they believe it is
“important to have him understand and respect and traditions of the
church,” Taylor said.
During the Lenten season they will be praying the rosary as a family, and
Will, through his assistive technology, will help to lead the prayers.
Taylor’s dream for her son’s faith journey is a simple one.
“My hope for Will is that he appreciate, identify and grow in his
faith,” she said.
Though her life is sometimes taxing, the energetic mother looks to Mary for
inspiration.
“I think about Mary all the time — the problems and the pain she
went through. I suspect Mary tried to be quite happy about it,” she said.
“Sometimes it can be difficult just to live, but I cannot imagine not
making the best of it. We can choose to have a joyful and happy life as
difficult as it is sometimes.”
As the challenges continue, Taylor will take a deep breath, perhaps cry a
little, but always face problems head-on. And Will, blessed with loving
parents, can continue his journey, supported by his faith.
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