Lawmakers Raise Disabled Kids

When Alex Sessions visits his dad at the Capitol, the 14-year-old boy makes a habit of proposing marriage to Rep. Marsha Blackburn.

Alex — the son of Rep. Pete Sessions (R-Texas) — was born with Down syndrome, the same chromosomal abnormality that Sarah Palin’s infant son Trig has.

Alex can’t bathe himself or cut his own food. At an age when a lot of kids are looking forward to getting their driver’s license, he is learning to ride his first tricycle.

Last summer, Sessions spent a weekend alone in the woods with Alex — an initiation requirement for the Order of the Arrow, the national honor society of the Boy Scouts of America. Scouts usually perform the required tasks in silence, but Sessions and his son took to whispering.

“I told him, ‘You’re a young man now, you’ll have to do things that dig deep,’” Sessions remembered. “You’ve got to give your baby confidence and talk to them like they’re a normal child, even though you know you’re working with a condition.”

Sessions isn’t the only member of Congress to face the challenges he and Alex are confronting together. Del. Eleanor Holmes Norton (D-D.C.) has a 38-year-old daughter with Down syndrome. And Rep. Cathy McMorris Rodgers (R-Wash.) has a 16-month-old son with the condition.

The three don’t see eye to eye on the parties’ presidential tickets, but they agree on this: If Palin wants to be vice president, having a child with Down syndrome need not stand in the way — provided that she has a network of support that can help her, and Trig, through the years ahead.

“Palin may have to ask herself what would happen if she became president,” Norton said. “I’m from a wave of do-it-all feminists, but I’ve always warned women that I was able to do it only because of the support system I had.”

Norton relied heavily on her husband, mother-in-law and hired help to care for her daughter, Katherine, while she pursued a career on the New York City Human Rights Commission and later as the first female chairman of the U.S. Equal Employment Opportunity Commission.

Norton, a Democrat, has served as the District of Columbia’s delegate to Congress since 1991. Katherine attends school during the day while her mother is at work. In the evenings, she spends time constructing puzzles and poring over old family photo albums with her mother.

When Sessions was elected in 1996 — Alex was still a toddler — he quickly shored up support from then-Republican whip Tom DeLay and others in the Texas delegation. He also enlisted the help of Rep. David Dreier (R-Calif.), who was his chairman on the House Rules Committee.

“[Dreier] was a very kind gentleman who understood when I came in a bit later on Monday and had to leave on Thursday evening,” said Sessions, who was a leader in the passage of the Family Opportunity Act, which provides extended Medicaid coverage to disabled children.

Despite the demands of Washington, Sessions says he hasn’t missed a weekend with his son in 12 years.

McMorris Rodgers balances the care of her son, Cole, with her husband, Brian, a stay-at-home dad who retired from the Navy several years ago. On average, she makes the six-hour flight back home to Washington state three weekends each month. Born with low muscle tone, Cole is undergoing intensive physical and speech therapy programs.

Down syndrome is a genetic condition that occurs when there is an extra copy of chromosome 21. Children’s intelligence levels and medical problems can range greatly. Many suffer from decreased muscle tone, heart defects, gastrointestinal blockages and other serious conditions that require surgery, medication and physical therapy.

According to the National Down Syndrome Society, the average life expectancy for a person with the condition is 56 years &mdas; more than double what it was just 25 years ago.

Sessions, Norton and McMorris Rodgers say the demands of a vice president pale in comparison to mothering a child with Down syndrome, potentially presenting Palin with challenges that few of her male predecessors have faced.

But they also say that Palin has advantages — among them, a larger family that will allow for a rotation of child-care duties. And while a high-stress job can drive some couples apart, Brian Skotko, a doctor at Children’s Hospital Boston, says caring for a special-needs child can bring them closer together.

During her acceptance speech at the Republican National Convention, Palin highlighted Trig’s condition and pledged her commitment to special-needs children — a move that ignited a blaze within the disability rights lobby. Political analysts say it could send a significant number of votes from the health care arena toward the Republican ticket.

“There are a lot of people who think living with a disability is worse than death,” said Andrew Imparato, president of the American Association of People with Disabilities. “This society is still kind of invisible as a political constituency, and that’s why so many of us got goose bumps from Palin.”

Palin knew before Trig was born that the baby she was carrying had Down syndrome. For Sessions, Holmes and McMorris Rodgers, the news came after their children were born.

All three warn of the reality checks ahead.

On Election Day 1994, Sessions suffered a huge blow when he lost his second bid for Congress by 2,400 votes. Hours later, he was slammed with even worse news: Alex, then an infant, was rushed to the hospital for emergency surgery with a life-threatening gastrointestinal blockage.

“At 2 a.m., I went from losing an election to 9 a.m. in the hospital,” he said. “I got over that loss real quickly. When your child is at risk … your outlook changes. You’ll do anything to save your baby.”

There are also moments of joy.

Alex loves visiting his father at the Capitol, where he explores the House floor and flirts with Blackburn and other female House members.

On the weekends, McMorris Rodgers takes Cole grocery shopping. Stimulated by the movement of the shopping cart, he sings from the front seat, often attracting the smiles of other customers.

“That is where I find joy,” she says. “People stop and smile and they say, ‘What a happy baby.’”

After Cole’s birth, McMorris Rodgers launched the Congressional Down Syndrome Caucus to help make life better for families confronted with the condition. In the meantime, she’s adjusting her own expectations for her son.

“It’s not what you dream for your child, but you quickly develop new dreams for your baby,” she said. “We have to accept the fact that Cole has Down syndrome, ... but I believe we’ve only glimpsed the impact he’s going to have on this world.”