"Wonderful Children, Beautiful Life"
When Heather Fox-Kauffman learned her newly adopted son had been diagnosed with Down syndrome, she cried.
“It wasn’t about the diagnosis,” she says. “I felt for him and what he was going to go through in life.”
That concern motivated the former Millersburg resident and her husband Steve to join with two other Carlisle families, Cori and Brian Guillaune and Andy and Tori Smarr, to found Central PA Down Syndrome Awareness Group (CPADSAG).
On September 18, the organization raised about $16,000 through its third annual Buddy Walk. Fox-Kauffman’s brothers, Matt Bellis and David Bellis, both of Millersburg, grilled 500 hot dogs for participants.
October is National Down Syndrome Awareness Month, and the 501K3 organization will sponsor a Halloween Party, 4 to 8 p.m., October 30, at the Camp Hill Banquet Facility, 2145 Walnut Street. The public is invited.
The group also funds activities such as summer camp, swimming and horseback riding lessons, all of which help DS children excel. Social events are held several times a year, and a recent information meeting assisted parents in setting up trust accounts.
“We wanted individuals who have DS to be accepted in the community because they are just like you and I,” Fox-Kauffman says of the reason for forming the group. “They don’t need to be stereotyped for being anything other than a typical human being like the rest of us. They just learn slower.”
Down syndrome results from a chromosomal disorder and causes delays in physical and intellectual development. Children with the disorder tend to show physical characteristics, such as flat facial features and slanted eyes.
Fox-Kauffman, who also has a 17-year-old daughter, Kaitlin, applied to adopt a child in 2004. On March 2, 2005, she and her husband were notified that an infant, who was born prematurely, was available for adoption.
Carson Wesley Kauffman weighed only 1 pound, 15 ounces at birth and spent months in a neonatal intensive care unit in New Jersey. A month after birth he was diagnosed with DS and a hospital social worker asked the Kauffmans if they wanted to proceed with the adoption.
“There was never ever a doubt in our minds,” Fox-Kauffman says. “He was our son before we even met him.”
During the months following his birth, Kauffmans spent weekends and some weekdays at the hospital. When they brought Carson home on June 3, Fox-Kauffman quit her job to care for him. He was also enrolled in Early Intervention services with the Capital Area Intermediate Unit, a regional educational service agency. Therapists came to their home three days a week to work with mother and son.
When Carson turned 2.5 years old and needed to make a transition to enter preschool, Fox-Kauffman said she felt overwhelmed.
“Now I was going to have to send him some place, and I was feeling a lot of anxiety at that point,” she says. “I just wanted to reach out to another family who either had experienced or was experiencing what I was feeling.”
Through a story in the book Gifts, Fox-Kauffman connected with another Carlisle mother in a similar situation, Cori Guillaune, and a lasting friendship and support system developed.
Carson is now a healthy five-year-old Kindergartner who knows more than 100 sign language signs. He loves to play ball and swing.
“He is doing great,” Fox-Kauffman says. “He is able to identify his capital case letters. They are working on lower case. He can say his alphabet. He can count to ten.”
According to Fox-Kauffman, parents need to realize that DS children are a precious gift from God.
“Carson has taught me more than I will ever teach that child--ever,” she says, her voice quivering with emotion. “I stop to smell the roses now, more than I ever did.”
And she has heard nothing but positive feedback on the formation of CPADSAG.
“Just to talk to another family that’s experiencing potty training, feeding issues, bathing issues helps us figure out what might work for us. It’s helpful to talk to someone who says, ‘This is how I’m feeling. Have you ever felt this way?’” says Fox-Kauffman.
Like Fox-Kauffman, Karen Weber cried when a doctor suspected her newborn daughter had DS because it was not the way she expected things to turn out. Olivia suffered from persistent pulmonary hypertension, sometimes an early indicator of DS.
But Karen and her husband, Colton, immediately recognized Olivia as a blessing from God and embraced a new normal way of life.
They smile as the 21-month-old cuddles on the couch with sister Victoria, 10, then toddles off to play with brother Joshua, 3. The Millersburg family also includes Christopher, 14, Joanna, 13, Timothy, 8, and Grandma Nellie Weber, Olivia’s secret chocolate supplier.
It’s a busy place since Karen homeschools the children. Olivia has weekly speech therapy and monthly physical therapy. She loves music and picture books and is starting to play with dolls and toy cars, making “vroom” sounds.
When her father urges her to say “please” in sign language, she appropriately swipes her hand across her chest. Children with DS are encouraged to learn sign language because normal language development may be delayed.
“Just like any of our other children, she just finds ways to move and get to places where you’re not expecting it that quick,” Colton says.
Support for the family has come from family, friends and the church they attend.
“At first I was wanting to connect with other people in the area who had children with DS, but I was not finding people,” Karen says. “I felt like the new kid on the block.”
The new normal at times seemed overwhelming as the Webers visited specialists—a geneticist, pulmonologist, neurologist, eye doctor and ear/nose/throat specialist.
“She really came with a big package of extra requirements,” Karen says. “But we don’t want her needs to overshadow those of the other children.”
The Webers’ goal for Olivia is the same as that for their other children, simply that she reach her full potential.
“We will push her just as we would push our other children, knowing she has limits that some of our other children don’t have,” says Colton.
Through the years, the outlook and potential for children born with DS has become more positive.
“The therapist keeps reminding me there’s a wide range of abilities,” Karen says. “You can’t predict what someone is going to be like. You can get ideas on some of the general issues you might face.”
While people often say Olivia is adorable, the Webers know that at some point people may stare at her or not know how to respond. Some may make cruel comments.
The Webers know it will take a lot of patience to teach Olivia to read and perform other essential tasks. But they focus on what they’ve gained by having a child with DS.
“It’s expanded our circle of friends or influence, there are people we would probably never have met if we didn’t have a child with special needs,” Colton says. “We have more empathy and more of a connectedness than we had before.”
“It’s been good for the other children, too,” Karen adds. “They have more compassion as a result. From the beginning I thought it would draw our family together, and it seems to have.”
According to Karen, in 90 per cent of all cases of prenatal diagnosis of DS, the pregnancy is terminated.
“I want to let people know how wonderful the baby is, how beautiful life is with a child with DS,” she says. “I want to encourage people to know it’s not the end of the world at all.”
Posted with permission of The Upper Dauphin Sentinel.