Kids with Down syndrome now recognized for unique gifts

[Guest guest]

Kids with Down syndrome now recognized for unique gifts

By Ed Langlois

Kerr with son Eli and and a Scheidler at the

Scheidler home.

Sentinel photo by Ed Langlois

LAKE OSWEGO — About four years ago, when she was 6, Scheidler

had to get jabbed. She was not happy about it.

While the nurse gave the injection, objected vigorously. It was such

an ordeal that the girl, who has flaming red hair to match her face that day,

got a sticker as a reward.

On the way out of the doctor’s office, still-sniffling saw a

dejected elderly woman in a wheelchair, face in hands. The girl stooped low to

catch the suffering woman’s eye and offered the hard-won sticker as a

gift of consolation.

That’s one story among many showing that children with Down syndrome

tend to have a keenly-developed generosity, extraordinary openness to others

and an uncommon capacity for joy.

“She’s such a spark,” a Scheidler says of her

daughter, the youngest of four.

“Parents come to us and are tormented,” says Kerr, who

with a founded an Oregon association for families who have a child with

Down syndrome. “In the media, more negative than positive gets presented.

We want the positive to be heard. In the end, these families don’t want

pity or sorrow. They want people to see the spark of joy.”

’s son Eli and are both 10 and both members of Our Lady of

the Lake Parish here.

In 2002, the two moms were at a loss. They wanted contact with others

who’d had children with Down syndrome and who could relate. The Down

Syndrome Network of Oregon now includes 30 families.

“It felt so good to be together, laughing and crying,” says

a.

The network, which is unashamedly faith-based, holds coffee sessions for

moms and dinners for dads, as well as whole-family outings. Members attend

regional and national events.

Both the Kerrs and Scheidlers have older children and both mothers at first

felt guilt when their new babies were born. They felt responsible for placing a

great burden on their loved ones.

Now they see their youngest children as gifts and they would alter nothing

given the chance.

“There is nobody in this family who would get rid of her or change

her,” a says of . “If there were a pill that would get rid

of the Down syndrome, we would not take it.”

Down syndrome occurs when cell division results in a third chromosome added

to the usual two. Motto of the support group is “Friends don’t

count chromosomes.”

Each year, about 5,000 children are born in the U.S. with Down syndrome. It

occurs in one out of 800 live births, with the incidence increasing as the age

of the mother advances. New tests on unborn children can detect the syndrome;

about nine 10 mothers carrying children with Down’s choose to abort.

The Scheidlers once had a mover who pointed at and said, “My

wife almost had one of them,” and then explained the child had been

aborted. a thought to herself — You ripped a great gift away from

your family.

Now, when a hears of a mother who may abort a baby with Down syndrome,

she offers to adopt.

has proven that she can see into the heart when others get hung up on

appearances. The Scheidlers boarded an elevator once and a burly, hairy,

mean-looking man got on as well. a shrank away in fear. But greeted

the man, who turned out to be kindly.

Next year, will be in fourth grade at Our Lady of the Lake School.

It’s rare for children with disabilities to attend Catholic schools. But

Joan Codd, the principal at Our Lady of the Lake, has stepped up as an advocate

for , who had three older siblings enrolled when she entered kindergarten

in 2004.

Students at Our Lady of the Lake tend to appreciate , giving her

high-fives, helping her when needed and treating her like anyone else when that

seems right. ran on the school’s track team this spring and is part

of a local swim club. Word spread around the school one day this spring —

had poured in 30 points during a pick-up basketball game at recess.

When she was pregnant with Eli, had an inkling that he might have Down

syndrome and she prayed that he wouldn’t. When he was born, she lost her

youthful sense of invincibility.

But now, Eli attends Oak Creek School, plays soccer, has pals and is a Cub

Scout.

long felt called to do something large with her life, perhaps serving as

a missionary to Africa. But the great work turned out to be living her everyday

life with Eli and her other children.

Once, was frustrated during church, because Eli kept initiating antics

with his teenage brother. She wondered if Mass were worth it. But the next day,

someone called. It was a man who had been sitting behind the Kerrs and who said

that God was clearly present in the love between Eli and his brother. The

caller said the scene helped him feel consolation in an hour of need.

The network of families allows to expand what she considers ministry.

Her husband Bruce, who owns an insurance company, is president of the

network’s board. a’s husband is a surgeon who helps run

the home often so a can be away on network business.

Like any child of 10, and Eli are now developing desires independent

of their parents’. The children can feel frustrated over that, as can the

parents. At the same time, maturity means Eli and can do more, like sit

through an entire play or enjoy Mass.

Other challenges in life don’t let up. Another child in the Kerr

family has diabetes. Scheidler has battled cancer.

These moms cringe when they hear platitudes such as, “God only gives

you as much as you can handle.”

Oh, and don’t call their children “retarded,” please. That

defies the truth that these youngsters have gifts unique to them.

“Not only are these gals just incredibly warm and welcoming,

it’s about celebrating our kids and our families — and appreciating

them for who they are,” says Jos Tervo of Portland, mother of 4-year-old

Iris. She joined the network and now cannot imagine raising Iris without the

support.

“The families who know the dignity and value of the life of their

child are the ones who will transform the attitude of society,” says

Dorothy Coughlin, director of the Archdiocese of Portland’s Office for

People with Disabilities. “They need to be listened to.”

Children with Down syndrome and their friends strap on their shoes for the

Buddy Walk, sponsored by the Down Syndrome Network of Oregon, on Sept. 21. The

event raises awareness and funds for education, research and advocacy.

For more information on the network, go to dsnor.org.