Striving For Independence

Benjamin, like other seven year olds, wants to do things for himself.

By Cindy Bevington,

Kendallville News Sun, Sunday, October 15, 2000

Seven-year-old Benjamin Sutton is a do-it-yourself boy. He likes to
decide for himself which story he will read, and insists on holding his own
storybook, pointing to and sounding out words as his mother reads aloud.

When he learned to play t-ball, his dad, Ben, helped him swing a the ball
at first, but after he got the hang of it, he shoved Dad away with an "I can
do it myself."

He has definite ideas about what outfits he wants to wear each day, and
wants input on what his mother sets out for him. He loves music, loves to
sing "Jesus Loves Me," and can recognize when a musical toy he's used
to playing with is broken. The sound fizzles and, despite repeated
attempts, won't come back on. "Broken." He says, simply, handing the
toy to his dad.

This summer he helped his mother Amy, plan his birthday party. He knew
exactly whom he wanted to invite and what kind of party it was to be—a
swimming pool party. He also aught himself to hold his breath under
water by watching other children do it.

"He's extremely independent," Amy says. "He enjoys having jobs around
the house, too—and, if you don't give him one, he'll give himself one. He
likes to be a helper. He has a real independent streak, and he's proud of
the fact that he wants a choice in things to do."

Ordinarily, these personality traits wouldn't sound unusual for a child his
age—and, they aren't except that Benjamin is a Down Syndrome Child,
diagnosed as mildly disabled.

"Benjamin has lots of things that he does that show he's more like other
children than not like them," Amy says. "He likes to tell you what he's
thinking, and he'll help you if you can't understand him."

"For example, this Summer, he kept telling us he wanted to go to a pool
with a 'big yide.' At first, I thought he meant yard, but he said no. When
we couldn't get it, finally he put his hands on his hips and said, 'the word
that starts with S'. He was trying to say 'slide,' but couldn't', because
Down Syndrome children have trouble with blended work beginnings. So,
he spelled it!"

Benjamin's frustrations at not being understood are only a shadow of what
his parents feel as Lakeland School Corp. tells them he needs to receive
the majority of his academic instruction in a resource room, away from the
other first grade students. The school system thinks Benjamin will be
better served there, where a paraprofessional and other support staff
would work one on one with him. The Suttons disagree.

And, Amy says, they apparently don't understand how taking Benjamin out
of the only setting he's ever known and placing him in an isolated
situation, where he won't interact with 'normal' children, could harm his
development.

"Hundreds of years ago, before Down Syndrome children had a name for
their condition, people believed these quiet and peaceful beings ere
angels come down to Earth, to live eight or ten years, and then depart
back to heaven." Amy says. "It was only in the last few decades that we
had Down Syndrome children live past the age of 30 or so, long enough
for us to learn all the things they're capable of. But now, with all the things
they know about caring for a child with Down Syndrome, the expected
lifespan for these kids is 55 or 60 years. As Benjamin's parents, we're
just trying to give him the best chance to be the best he can be."