Margaret Henderson counts her blessings every day when her daughters Adalyn, 3, and Sophia, 2, smile.

Midway through her pregnancy with Sophia, Henderson and her husband Thomas, a Pittsburgh police officer, learned their new baby would be born with Down syndrome. Down syndrome, also known as trisomy 21, is a medical condition in which the presence of an extra chromosome affects mental and physical development.

Henderson had never known anyone with the condition. It is routinely identified with developmental delays, mild to moderate mental retardation, and flattened facial features including an upward slant of the eyes.

"I went through a period of grief and anger that lasted about two weeks," the 29-year-old Green Tree woman recalls. "Then I decided to get on with life."

Thanks to those prenatal tests, the Hendersons learned about western Pennsylvania’s support services for Down syndrome before they needed them.

By the time Sophia was seven weeks old, she began receiving early intervention therapies -- both cognitive and physical -- to help her develop to her full potential.

"She's just starting to walk now and come into her own. She's definitely hit the terrible twos. She knows 'no,'" says Henderson, a University of Pittsburgh researcher in aging and memory, who is also a part-time nursing student. "Her favorite thing right now is to go to the zoo. She loves elephants, hates bananas and instead of 'bye, bye' says 'see ya.'"

Sophia is "super healthy," her mother says. But, like one in three people with Down syndrome, she has heart defects. In her case they're minor. And persistent ear trouble required the placement of tubes in her ears.

Although finding childcare can be an issue, experts say pre-schools increasingly are accepting children with Down syndrome and learning from therapists who travel to childcare centers to provide early intervention.

In Henderson’s case, the same good friend who watched Adalyn now helps out with childcare for the two sisters.

"And my mother-in-law is fantastic," she adds.

Like Henderson, Nancy Murray, a Bethel Park mother of two adult children with Down syndrome, never knew anyone with the condition.

Murray and her husband, Joe, enrolled in a host parent program for children with Down syndrome in 1977. That's when Michael, now 39, and Marisa, now 35, came to live with them.

Today, Michael lives in a community residential home, works on a supported hotel cleaning crew and comes home on weekends.

Marisa is a bagger at Giant Eagle, a job she got on her own.

In her spare time, Marisa puts Murray through the paces on the golf course.

"Her handicap is better than mine," Murray says.

Down syndrome affects about one in 800 or so live births and carries a wide range of disabilities. Stereotypes dating back to the middle of the 20th century when many physicians in the U.S. recommended institutionalizing such children have faded.

Experts with the Down Syndrome Association of Pittsburgh now advise families that while children with the condition may be slower to reach their milestones most will "walk and talk, ride a bike and read and write."

In 1975 the federal government guaranteed children with Down syndrome the right to a free and appropriate education from ages 3 to 21 years. In 1986, Congress mandated early intervention services for such children from birth through age 2.

Western Pennsylvania became a national leader in Down syndrome in 1989 with the establishment of the Down Syndrome Center at Children’s Hospital in Pittsburgh.

Sheila Cannon coordinates the program that serves families in the tri-state area. It is one of few in the U.S. that provides cradle-to-grave medical services for individuals with Down syndrome, as well as referrals to local programs. Dr. Peter Bulova is the center’s expert for adults with Down syndrome.

Also at the center are Dr. William Cohen, a developmental and behavioral pediatrician, and pediatric nurse practitioner Susan Van Cleve.

The center provides advice about the special physical, developmental and nutritional needs of individuals with Down syndrome.

"For families who have a baby with Down syndrome, it can seem overwhelming,” says Cannon. “It can be like a journey through a dark forest where there are branches and stones in the way. That’s why we’re here to help families figure those things out."

Cannon says ear, nose and throat problems as well as sleep issues – restlessness and an inability to sleep -- are common among those with Down syndrome. When sleep issues arise, the Down Center can connect families with the Sleep Center.

Agencies such as county-based ARCs and Allegheny County's Achieva help with day-to-day needs, such as recreation, parent support, education and job training.

But even today, parents continue to carve niches in the community for children with Down syndrome.

Regina Scuillo, of Latrobe, started a support group for parents of toddlers with Down syndrome after she and her husband David moved to the Westmoreland County area when their son Nick was 18 months old.

"There just wasn’t anything available," she says.Today, she directs the family support program at the ARC of Westmoreland.

Nick, who is 13 and going into seventh grade in the Latrobe schools, plays basketball in a regular community league with about 200 other children and plays around with older brother, Max, 15, as well as other friends.

"More than Nick being included for Nick’s sake, what a great opportunity for everybody else to say here’s a child with Down syndrome and he’s part of our community," Scuillo says.

Like Scuillo, physical therapist Dan Glatz, of Cranberry, created opportunities when he found a void in his Butler County community.

Four years ago, Glatz, the father of a 9-year-old daughter with Down syndrome, started the Red Octopus, a special recreation program for children with disabilities.

His daughter, Danni, then 5, saw her three siblings playing soccer and wanted to play.

"She had an attention span of about five seconds and would have fallen over if you’d blown on her," Glatz recalls. That's when Glatz decided it was time to develop the program, which is now offered through the Cranberry Township Recreation Department.

Experts say planning for the future is a must when family members have Down syndrome.

Murray, who holds a master’s degree in child development and now works with Achieva, says the greatest challenge many families face is when their children hit 21 and age out of the school system.
Job training and placement programs, as well as financial planning services and residential group living programs are available, but families need to actively seek them through the support groups and programs in the community.

"If you’re not planning, they can end up sitting at home, staring at the TV," Murray says.

Despite such challenges, Murray says parenting her children has been a reward in and of itself.

"They’ve enriched our lives more than we could ever have imagined."

For more information:

The Down Syndrome Center at Children's Hospital: 412.692.7963 or www.chp.edu

The Down Syndrome Group of Western Pennsylvania: www.dsapgh.org

ACHIEVA: 412.995.5000 or www.achieva.info

ARC Westmoreland: 724.837.7453 or www.arcwestmoreland.org

The ARC of Beaver/Achieva: 724.775.1620 or www.achieva.info

ARC Butler: 724.282.1500 or www.arcbutler.org

ARC Fayette: 724.438.9042 or www.arcfayette.org

Washington County: 724.228.6832 or
www.washington.pa.us/maindepartment.aspx?menuDept+14

The Red Octopus: 724.816.3583 or dglantz@performanceunltd.com