Francesca Rankin can still see glimmers of her brilliant boy beneath the
autism that's coiled around his mind.
Her son Josh, 17, can recite phrases from a vocabulary that spans at
least six languages. If he's ever learned your birthday, he can tell it to
you from memory. He can recite Edward Lear's "The Owl and the Pussycat," a
33-line British poem, start to finish, and with a rhythm as smooth and
clipped as, say, actor Joaquin Phoenix, to whom Josh bears a striking
physical resemblance.
But ask Josh the name of the poem, and he probably can't understand why
you'd want to know. Try to hold a conversation in Japanese or French or
even English and he won't get past a couple of sentences.
Autism is a complex developmental disability that affects cognitive
functions, including an individual's ability to socialize, communicate and
concentrate. Until the onset of the condition, at age 2, Josh was
considered perfectly healthy and gifted, his mother said.
He's made tremendous strides in the past few years, she said, but he
still requires extra attention that she cannot always give him.
Josh is a participant in a new summer program called Strive, designed
for students too old to attend other programs for youth with developmental
disabilities. Those administering the new program say they're bridging a
gap in special education on Hilton Head Island. Because many of the area's
developmentally disabled children are ready to leave the public school
system, they have found themselves without the summer programs that keep
their skills from deteriorating.
'NOTHING' FOR THESE KIDS
Special education experts agree that summer education is vital for
children with developmental disabilities. Such children often need
repetition to learn and maintain basic skills. Without that repetition,
they regress much faster than other children.
Rankin said she has looked for activities for Josh during the summer.
She asked Programs for Exceptional People, which teaches adult work
skills, to take on Josh, but he wasn't old enough. The Boys and Girls Club
offered Josh a spot in its summer programs a few years ago. But Rankin
couldn't find another child to shadow him.
"Summers were an absolute disaster," she said.
Near the end of this school year, Rankin found the Strive program. The
program, which takes on children with a wide range of disabilities, is
funded by a $20,000 grant from the Community Foundation of the Lowcountry,
and administered by Programs for Exceptional People, the same organization
that Josh was too young for.
"This is the part where I gush about it," said Rankin, who talks about
how the program has enhanced Josh's social skills and given him work
experience, by doing one-on-one activities and taking the eight
participants to places like Radio Shack and The Lowrey Group to learn
sorting and cleaning skills.
"He was coloring the other day," Rankin said. "I was so thrilled to see
that, because he has difficulty with fine motor skills and concentration."
Josh is too old to participate in the Challenge Program, the only other
summer long camp for children with disabilities. Rose Fotia, president of
the Children's Relief Fund, which partially funds the Challenge Program
and wrote the grant for the Strive Program, said that the former had a
pair of children who "simply got too old for it."
"You take an 18- or 19-year-old and stick them with little children,
they just don't fit in," Fotia said. "It just was no longer appropriate
for these kids. We had to set an age limit" of 16.
If Josh were not in the Strive program, he probably would be at home,
his mother said. He would be at his computer with little social
interaction, committing more languages and poems to memory and finding
himself no closer to using them, she said.
"If we were in New York, there would be social clubs and things,"
Rankin said. "But around here, when they get a little older, there's
nothing, just nothing, for these kids."
A CURSE
Bobby Parker, a Strive counselor, discovered Josh's talents and
limitations early on.
"I speak French pretty well," said Parker, a 17-year-old student at
Savannah's Gross High School. "One day I said something in French, and he
just turned around and said something back to me in French."
When Josh was born, it quickly became apparent he was gifted, his
mother said. When he was 2 years old, and the family was building a house,
Josh told her, "Horses can't build houses, because they don't have hands."
A few months later he began to regress, she said, until a diagnosis was
confirmed at age 4.
Autism has, in essence, taken Josh's ability to filter and organize the
world around him. One sensory input often seems as important as another.
His mother compares those in the Strive program to radios "that have bad
reception because they're just tuned in to too many stations."
Much remains unknown about autism and its causes. It is generally
accepted that abnormalities in brain structure or function cause the
disability. A broad body of evidence shows that people with autism can
significantly improve their logic and social skills under the proper
tutelage. Since Josh began visiting a speech therapist twice a week, "he's
made tremendous progress," his mother said.
Some speculate that autism is a curse that afflicts the gifted.
"When we lived in London, we knew one of the world's leading autism
experts," Rankin said. "He described autism as genius gone horribly
wrong."
'GLIMPSES' SEEN
Francesca Rankin remembers when Josh was 3 and autism was just
beginning to manifest. They were at an airport, waiting for a flight. Josh
said he was hungry. Someone offered him a bag of potato chips.
"I remember he told the person, 'No, the little boy needs protein, not
carbohydrates,' " she said. "It was remarkable. He was -- he is -- just
remarkable."
One of Josh's dreams right now is to teach foreign language someday.
"I think I'd be good at it," he says, a little sheepishly.
Rankin acknowledges the odds are slim that her son will fulfill that
dream. She believes in miracles, but knows that his teaching really would
be a miracle. With more resources, she said, who knows?
Still musing over what her son said in the airport, Rankin says she can
remember, clearly, all the things he could do.
"That's why I'm hoping there's something that can bring out what was
lost in him," she said. "I can see glimpses, every now and then."