Parents cherish their children with Down syndrome
As high numbers of unborn babies with condition are aborted, families explain gifts that they bring
By Michelle Martin - OSV Newsweekly, 10/2/2011
Colleen Altman (right) with younger siblings Patrick, Michael and Megan. Courtesy of the Altmans Courtney and Dennis Elbert’s son Sam is luminous, his mother says. With his bright eyes and tow-colored hair, he seems to give off a little bit of a glow.
He’s an active 7-year-old who plays soccer, basketball and baseball. He wakes up happy, and can perceive when others are feeling sad. He’s quick to try to cheer them up with a joke or a song.
A first-grader at St. Leo School in Versailles, Ky., Sam seems to have a deeper connection to Jesus than most children, said his mother. When he prays, he’s not just saying the words. He means it.
But many people don’t notice all the things that are wonderful about Sam, Courtney Elbert told Our Sunday Visitor.
“They just remember he’s ‘Sam-with-Down-syndrome,’” she said. “And there’s so much more to him.”
Personal affront
According to studies reported by the National Center for Bioethics Information, slightly more than nine out of 10 women who receive a prenatal diagnosis of Down syndrome choose to abort their babies. Some pro-life advocates fear that rate will increase with the development of a new, noninvasive test for the condition that doctors say will be able to be administered as early as the ninth week of pregnancy — before many expectant parents announce their status. The only tests currently available so early in pregnancy carry a slight risk of miscarriage, so many women avoid them.
“I take this personally,” Courtney Elbert said. “To me, it’s a eugenic bull’s-eye drawn on these babies. Life, which is a work of God, should not be denied to anyone. I cannot apologize for my son, because he is a gift.”
What is Down Syndrome?
Most children with Down syndrome have mild to moderate impairments, but they also have many gifts. Early intervention services including physical, speech and developmental therapies should be offered shortly after birth. Most children attend their neighborhood schools, some in regular classes and others in special-education classes. Some children have more significant needs and require a more specialized program.
About 40 percent of children with Down syndrome have congenital heart defects, and they have a higher incidence of infection, respiratory, vision and hearing problems as well as thyroid and other medical conditions than typical children. However, with appropriate medical care most children and adults with Down syndrome can lead healthy lives. The average life expectancy of individuals with Down syndrome is 55 years, with many living into their 60s and 70s.
The Elberts have found support both in the Diocese of Lexington, where Courtney Elbert has served on the inclusion committee since the year Sam was born, and at St. Leo Parish, where they started SPICE (Special People in Catholic Education), to support the formation and education of people with disabilities, raising both awareness and funds to pay for everything from extra staff and educational materials to professional development for teachers.
October is Down Syndrome Awareness Month, and the families of children and adults with the condition are eager to get the word out about their loved ones and the way those with Down syndrome have affected their families. Dioceses and parishes are increasing their efforts to serve families and individuals with Down syndrome, whether by offering special religious education or including them in regular religious education or in Catholic schools. The National Catholic Partnership on Disability offers training webinars on ministering to people and families with disabilities and additional support for diocesan disability directors and other personnel.
Facing the fears
Some parents of children with Down syndrome say they understand the dread that expectant mothers and fathers might feel about a prenatal diagnosis of Down syndrome, because they once felt scared and overwhelmed. But most of them have learned that reality is far different from their fears.
Pat Grimberg’s daughter Elizabeth, the eighth of nine children, is 26 now, and her life is nothing like what Grimberg pictured when she was born.
“I think that I cried every single day when she was born for at least a year,” Grimberg said, after being told about all the things Elizabeth wouldn’t do. But then Elizabeth started doing lots of those things, and learning how to fit in with her siblings.
“You have someone who is mostly always happy,” Pat Grimberg said. “She was always an upbeat kid. You never had a sleepless night wondering where she was going or when she would be home. She’s been kind of a delight.”
Elizabeth attended high school at the Academy of the Holy Cross in Kensington, Md., the same school her sisters attended, and Grimberg said she also attended Catholic elementary school for a few years. Now Elizabeth Grimberg lives at the Stewart Home School in Frankfort, Ky., a place for disabled adults where she has friends and has made a home, Grimberg said. “We’d like to have her with us more,” Grimberg said, “but after about 10 days with us, she’s ready to go back. She’s having so much fun.”
Jane Altman of Chicago grew up knowing the Grimbergs, so she was familiar with Down syndrome before she and her husband, Bill, had their first child. Colleen, was born 14 years ago with Down syndrome when Jane was 27 years old, with no inkling that she had the condition until their pediatrician told them about three days after she was born.
Colleen attends her neighborhood public school, included with another child with Down syndrome in a regular education eighth-grade class. The school also has a self-contained special-education room and the staff and resources to meet Colleen’s needs. Earlier, she went to a Catholic preschool and grade school, and her younger sister and brothers attend their parish school, St. Andrew.
She participates in a range of activities, some with typical children, some with children with all kinds of disabilities and some with other children with Down syndrome. That mix is important, Altman said, because Colleen needs to be involved with all kinds of people, and she needs the freedom to make her own friends.
Maria Hudak has never had much trouble making friends. The 38-year-old daughter of Jeannette and John Hudak, Maria is married to a young man named Danny, who also has disabilities. The couple is active at St. Isaac Jogues Parish in Baltimore, where Maria Hudak has been an extraordinary minister of Communion for years. She hasn’t done that so much recently because arthritis in her knees makes it difficult to get up and down the sanctuary stairs, her mother said, so Maria and Danny are thinking of becoming greeters instead.
That would be a perfect ministry for them, she said.
“They know everyone in the parish,” she said. “And everyone knows them.”
Like Pat Grimberg, Jeannette Hudak was told that her daughter “wouldn’t do anything. She probably wouldn’t talk. I didn’t even know what Down syndrome was. But I was determined to learn as much as I could and teach her as much as I could.”
Needed people
Deacon Pierce Murphy of the Diocese of Boise, Idaho, and his wife, Mary Anne, learned all about Down syndrome years before their youngest son, Liam, was born with the condition. They had already adopted one special-needs child and were planning to adopt another when they were matched with a newborn boy with Down syndrome, so they did all the research they could to prepare to take him into their family. The adoption fell through, and they adopted another child. But when Liam was born, Deacon Murphy said, the couple felt the Lord had prepared them.
While Mary Anne Murphy had home-schooled all of the family’s eight children, last year Sarah — Liam’s next-oldest sister — asked if she could go to school this year, because all of the older children were out of the house and it was too quiet. When she and Mary Anne visited St. Mary School in Boise with Liam in tow, the principal told them, “We’d be delighted to have Sarah enroll. But we really want Liam. Our school needs him,” said Deacon Murphy, who is his diocese’s Respect Life coordinator. Now Sarah is in the sixth grade, and Liam, 7, is in kindergarten.
So in early September, Deacon Murphy assisted at the first all-school Mass of the year at St. Mary and saw his son sitting with his class and smiling as they filed out of the church. “He’s always ready to go in the morning,” Deacon Murphy said.
He wants more people to understand what the principal at St. Mary’s did: We need people with Down syndrome.
“The world needs all the people that God creates,” Deacon Murphy said. “That’s one of the things I’m deeply concerned about: all those children who won’t be part of our society. The gifts that people with Down syndrome bring … they are the presence of God in our lives. I worry about a world where so many people have decided that there is no room for someone they don’t see as perfect.”
Michelle Martin writes from Illinois.
Thursday, September 22, 2011
“The world needs all the people that God creates,” Deacon Murphy said.
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