Not long after the birth of their son, Scott and Wendy Zook of New Enterprise were flooded with sympathy cards. Their baby boy Zachary (now 2) was healthy and thriving, but he had Down syndrome. Well-wishers were more focused on the diagnosis than congratulating the Zooks on the birth of their baby.
"We had a healthy baby and we were getting sympathy cards. Can't I just celebrate having this great new baby? It's still a new baby," Wendy said.
Sadly, the sympathy cards were somewhat in-synch with Wendy's initial emotions and reactions to discovering her son had Down syndrome. "We almost had to grieve the child we thought we were getting," Wendy said.
Mirror Moms photo by Patrick Waksmunski
Zachary and his mom, Wendy, play in the Zook’s New Enterprise home.
Wendy's reaction is common for new parents who are unaware their child would be born with Down syndrome. Rejection, fear and guilt are feelings new parents experience, especially when they are not prepared for the diagnosis.
While some parents are alerted through abnormal ultrasounds, blood tests or amniocentesis, others are completely clueless until the baby is born. Prenatal screenings estimate the chance of the fetus having Down syndrome, but the only tests that are 100 percent accurate are diagnostic tests.
The following agencies can help
families with special needs children:
The Arc of Blair County
431 Jackson Ave., Altoona, 946-1011
Easter Seals Central Pennsylvania
201 Chestnut Ave., Altoona
Home Nursing Agency
201 Chestnut Ave., Altoona
North Star Support Services
500 Lakemont Park Blvd., Altoona
National Down Syndrome Society
"Since many expectant parents choose to forgo prenatal tests, most cases of Down syndrome are diagnosed after the baby is born. After birth, doctors will usually suspect Down syndrome if certain physical characteristics are present," says Julie Cevallos, vice president of marketing for the National Down Syndrome Society.
In Zachary's case, there were no indicators of Down syndrome and there was not an official diagnosis until a week after his birth. Wendy, who was 28 when Zachary was born, had a pretty uneventful pregnancy and no inkling that something might be wrong.
"I was one of those annoying pregnant women who loved being pregnant," Wendy says. "I didn't have any issues."
The two ultrasounds didn't find any problems, and the Zooks opted to not do further testing because "the chances of us having a child with Downs were much less than chances of us having a miscarriage."
After a marathon labor, which resulted in an emergency C-section, Zachary was born on Aug. 7, 2010 at 4:30 p.m., and Wendy didn't think anything was abnormal with her beautiful baby boy.
Two days later, however, a pediatrician broke the news that Zachary was showing signs of Down syndrome. The eternal optimist, Wendy believed Zachary would be fine. One week later, the Zooks received the official diagnosis.
"You sort of run the whole range of emotions," Wendy says. "It was definitely scary, but you have to keep going with the normal things too."
Zachary was a newborn, and he needed to be fed, changed and loved. In those early days, Wendy didn't want to let him go - like if she kept him close enough, maybe Down syndrome wouldn't exist.
Coping and thriving
Raising a child with Down syndrome can seem like a daunting task, especially if you don't know where to turn and you lack support. Almost immediately after Zachary's diagnosis, the Zooks were connected with Early Intervention Services. Zachary continues to receive weekly services from occupational therapists, a physical therapist and a special instructor, who works with Zachary through interactive play.
Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21, which alters the course of development and causes characteristics associated with Down syndrome.
Common physical traits of Down syndrome, according to the National Down Syndrome Society, include low muscle tone, small stature, an upward slant to the eyes and a single deep crease across the center of the palm. As far as abilities, all people with Down syndrome experience mild to moderate cognitive and physical delays. Early Intervention Services help young children with Down syndrome develop skills they need. Children who are 3 or older are aided by educators from their public or private schools, and other area agencies.
Once a family is enrolled in the Early Intervention program (usually through Southern Alleghenies Service Management Group and then North Star Support Services), agencies and therapists work together to help the child meet developmental milestones, says Janet Pennington, clinical director and speech language pathologist with Easter Seals. Easter Seals is one of the agencies which provides services for children and adults with special needs.
"Everyone is working as a team," Pennington says.
The services available range from social work, speech therapy, hearing and vision work to special instruction, occupational therapy and physical therapy.
"The services are based on the individual child and their family," says Kelly Popich, early intervention program coordinator in Blair County for the Southern Alleghenies Services Management Group. "We're a family-based program and we teach caregivers how to support their child in development."
Services have been invaluable for Angela Bucher's son Aaron, a 13-year-old sixth-grader with Down syndrome.
The Buchers of Altoona also didn't find out about the Down syndrome diagnosis until Aaron was born, even though screenings indicated everything was fine.
Aaron began therapy, physical, occupational and speech, when he was 10 days old, and he has come a long way. Though Aaron is behind his peers physically and educationally, and he often misses social cues, he's a happy, healthy boy who is integrated into a regular sixth grade classroom.
"I didn't have a lot of expectations. He was my first child, so I didn't know what to expect," Bucher says. "I didn't really have a lot of 'We're going to make him into a star baseball player' or 'He'll be president.' I wanted to have a healthy child, and I wanted to give him a healthy childhood."
An important part of providing a happy childhood is seeking support. Bucher leads a Down syndrome support group through The Arc of Blair County. When Aaron was small, Bucher and her friend Maliea Smith, (whose daughter Addison has Down syndrome), started the support group to help other families. The group meets at least four times a year and sometimes meet at other times for play dates.
"We try to keep in touch so we can discuss milestones and questions," Bucher says.
Dawn Pellas of Patton, whose 11/2-year old daughter Saffron has Down syndrome found it comforting and enlightening to talk to other parents whose children have the condition. Saffron was also born with a heart condition and underwent open heart surgery as a newborn, so the early months of her life were spent in the hospital. Once Saffron recovered from surgery, Pellas and her husband, Garret, discovered life wasn't as bad as they expected.
"It's hard. I'm not going to say it isn't, because it's scary," Pellas says. "Finding support is a big deal."
A normal life
With Zachary's second birthday approaching on Aug. 7, the Zooks look back on those stressful, frantic days and realize they were "freaking out about nothing." Hindsight is everything, and Wendy and Scott were worried about everything Zachary might not be able to do, and how different and challenging it would be to raise a child with Down syndrome.
With quality educational programs, a stimulating home environment, good health care and positive support from family, friends and the community, families and their children with Down syndrome can lead happy, fulfilling lives. Pellas thinks back to the early days of caring for Saffron and her worry and fear.
"It's amazing the world that's opened up for us. We didn't know that this would be what it is. How stupid was I to be so worried," Pellas says.
The Zooks express similar sentiments.
Despite the onslaught of therapists, the Zooks are like a lot of other families.
"It's a good normal life," Wendy says. "A little hectic and crazy, but normal."