On a Special Mission

Members Reflect on Children With Disabilities

Posted September 16, 2008 at 5:23pm

Rep. Cathy McMorris Rodgers, the 39-year-old Washington state Republican, had an uneventful pregnancy in late 2006 and 2007, with the possible exception of a few interesting floor debates and a handful of baby gifts from fellow Members.

But three days after her first child was born at National Naval Medical Center in Bethesda, Md., in April 2007, McMorris Rodgers learned that her baby had Down syndrome. Since then, the young mother and two-term Member has become an instant expert on the disability, learning to adjust her schedule around doctor’s appointments and throwing herself into planning for her son’s future. Now she realizes that future might not include the usual dreams of going away to college, raising his own family or even living independently.

“Being a new mom changes your life, and everyone tells you that,” McMorris Rodgers said. “Becoming a new mom to a child with Down syndrome makes it personal, and you can’t understand it until you go through it.”

The work-life debate has received heightened attention in the weeks since Alaska Gov. Sarah Palin was named the Republican vice presidential nominee. The mother of five has an infant son with Down syndrome, and as some wonder whether Palin can effectively govern while caring for her family, a handful of Members do just that every day.

At least three Members have a child with Down syndrome, a disorder that stalls physical and mental development, and is caused by the presence of an extra 21st chromosome.

“I remember when we received confirmation that Cole had Down syndrome,” McMorris Rodgers said. “We didn’t know for three days after he was born. We sat down with a team of people, and they tell you everything that can go wrong. It’s overwhelming.”

McMorris Rodgers criticized the way she and her husband were briefed on “all the negative aspects,” such as the possibilities of heart defects, hearing problems and the early onset of Alzheimer’s in adulthood. At the same time, she moved quickly to come up with solutions. As a mother, she carved out a supportive network of parents and caretakers knowledgeable about the subject of raising children with special needs. As a legislator, she has pushed legislation that would provide families with more comprehensive information on the risks and possibilities for those with special needs.

“As you start to get to know your baby, you realize that so much of the information is negative. You fail to get a balanced view of your child’s future,” she said.

Like his mom, Cole splits his time between Spokane, Wash., and Washington, D.C. As she bolts between the coasts for work, reading policy briefings and keeping track of district news, she has quickly learned the additional responsibilities that come with having a disabled child. There are more doctor appointments and occupational and physical therapy treatments to consider. McMorris Rodgers and her husband had to map out a plan, in accordance with the Individuals with Disabilities Education Act, to keep Cole’s physical and mental growth as much on track as possible.

The Congresswoman travels back to her district office most weekends when Congress is in session, along with her husband and son. She staggers her Congressional schedule to fit in Cole’s doctor’s appointments but relies on her husband, a retired Navy commander, to take care of Cole’s day-to-day needs.

“It makes me a better Congresswoman. You understand the issues American families face every day,” McMorris Rodgers said.

The Republican said she has received “hundreds, if not thousands” of letters and e-mails from families throughout the country who wanted to share their own stories with the new mother, the first Member of Congress to have a baby while in office since then-Rep. Blanche Lincoln (D-Ark.) in 1996.

One of those early supporters was Rep. Pete Sessions (R-Texas), whose 14-year-old son, Alex, has Down syndrome.

“It was different for me because I’m the dad, but we all saw Cathy carrying that baby,” Sessions said.

“I told her she needed to protect that baby and that she needed to build him a nest,” he added. “When you have a child with special needs, they need a safe place, one home.”

Alex Sessions lives in the family’s Dallas home with his parents and older brother. The dark-haired seventh-grader attends a local middle school, but he cannot read or write.

Unlike McMorris Rodgers, who is poised and reserved when she talks about Cole, Sessions oozes emotion at the mention of his son. The elder Sessions flashes photographs from every special occasion, brags about every accomplishment and tears up when he talks about his younger son.

“Look at this guy, isn’t he cute? And here, when he was just a little fella,” Sessions gushes, pointing to pictures of Alex in the tub, at a campaign event and in his Boy Scout uniform.

Sessions, McMorris Rodgers and Del. Eleanor Holmes Norton (D-D.C.), who has a 38-year-old daughter with Down syndrome, launched the Congressional Down Syndrome Caucus last May. Rep. Patrick Kennedy (D-R.I.), who hails from perhaps the most noted family of special needs advocates in the country, is also a founding member of the caucus, which aims to educate Members about the disability and push meaningful legislation.

“I believe it’s important to tell Alex’s story, and the story of these other kids,” Sessions said. “As a result of [Alex], I get to be a better Member of Congress.”

Sessions, a conservative Republican, worked with Sen. Edward Kennedy (D-Mass.) to pass legislation ensuring Medicaid coverage for families with disabled children, even if their income increases. A pending bill in both chambers would allow parents, who often face additional health care, education and living costs for their disabled children, to create savings accounts on a pre-tax basis.

“There are a lot of issues that roam back and forth that we get engaged in.” said Sessions, who sits on the Rules Committee.

Sessions’ wife, Juanita, works full time and a hired assistant helps with Alex during the week. Alex works with a tutor three times a week and his proud father is hopeful that Alex will be reading by year’s end. The family is constantly quizzing Alex on his letters, colors and numbers, challenging him to master basic skills that his 18-year-old brother, Bill, never had to grapple with.

“It’s constant pushing. It’s a constant struggle. You have to get them to expand their comfort zone,” Sessions said. “There’s a whole bunch of things on a day-to-day basis that we’re trying to teach him,” from tying his own shoelaces to riding a tricycle.

The Sessions just moved their oldest son into a college dormitory at Southwestern University in Georgetown, Texas. Alex now talks about going to college and becoming a police officer, and while both options are highly unlikely for the youngster, the Sessions are grappling with what to do with their son after he finishes high school. Some adults with special needs are high-functioning enough to live independently and work full time, while others stay with family members or even move to health care facilities.

Katherine Felicia Norton lives full time with her mother, Del. Norton, and attends a “workshop” every day for adults with special needs. The Congresswoman noted that her daughter is “very limited” — she cannot read or write — but she does get around the District by herself and has plenty of friends.

“It’s important if you’re going to have a person with special needs living with you not just to be a custodian. You need to be a parent,” the Congresswoman said.

Norton was the human rights commissioner of New York City when Katherine was born in 1970. She went back to work just one month after giving birth and relied on extended family to help with Katherine.

Norton has held high-demand jobs throughout Katherine’s life, but the divorced mother of two has limited other things, like a social life, to care for her daughter. Now that Katherine is an adult, Norton’s main focus is making sure her daughter is living a happy life. Katherine attends arts workshops for adults with special needs, loves puzzles and still likes to be read to.

Katherine, the Congresswoman’s only daughter (she also has a son, John Holmes Norton), will likely not follow in her mother’s footsteps. Norton, like so many parents of those with special needs, has accepted her child’s limitations and in doing so, has discovered new possibilities.

“Katherine is far more limited than we thought she would be. Of course, we gave up those expectations a long time ago,” Norton said, adding “She is the love of my life. She gives me such joy.”

As McMorris Rodgers enters the next stage of life with her son, who will start attending school in two years, the Sessions family is beginning to consider what Alex will do when he graduates high school in seven years. For Katherine, arts workshops have filled her life and continued to stimulate her. The same option may not work for Alex. With the help of special needs professionals, teachers and perhaps a few Down Syndrome Caucus members, the Sessions family will figure it out, but the worry and stress that come with such decisions are not lost on the Congressman.

“I wonder if he’ll have a zest for life. If he’ll enjoy things. If he’ll be happy,” Sessions said, leaning forward. “As a parent, I have a job to get him to overcome obstacles, to become independent, but I still don’t know.”