Faces of Hope and Courage: Parents Discuss Raising a Child with Down Syndrome
Thursday, Nov. 13, 2003 — the day is still vivid in my mind. I was in the laundry room folding clothes when the phone rang. It was my brother-in-law relaying a wonderful message — my niece, Elizabeth Joy, had been born!
Then he cautiously voiced the next piece of information — it was relatively certain that she had Down syndrome.
I remember the long pause before I asked a flurry of questions, none of which he could really answer at the time. We hung up, and I called my husband with the news. We cried together over the phone. I’m sure we were crying for a myriad of reasons with the main one being the unknown.
Several local families know well that sense of uncertainty. But, over time, they have come to know much more than those unstable feelings. Yes, there are frustrations and setbacks, but there also are laugh-filled days and a general sense of positivity and ceaseless love that comes from having and raising a child with Down syndrome.
In short, they are like any other family.
Beth Keim and her husband, Jonathan, of State College are parents to two energetic boys, Isaac (6) and Eli (2). Within an hour of Eli’s birth, the Keims received his Down syndrome diagnosis.
“We were very accepting,” Beth recalls, “although it was a little unnerving to leave the hospital without more concrete knowledge. Jonathan’s stepsister has Down syndrome, and she has been in our lives for so long. We had some experience in that regard.”
Beth goes on to say that, just as any family, they take the good days with the bad. “I’ve learned to just deal with today,” she says. When talking about standards or benchmarks concerning Eli’s development, Beth’s no-pressure attitude shines. “He’ll get there when he gets there,” she says.
While witnessing Eli in action, the first thing you notice is his charming smile and his slight fist-waving Hello. He’s a quick mover, recently accomplishing the challenge of climbing stairs.
“He’s starting to play and wrestle with his older brother, whom he worships,” Beth shares. “Isaac is a great older brother, definitely a protector of Eli.”
Kara Weitzel of State College is a six-year-old first-grader who enjoys playing with her friends, having tea parties with her babies, and building with blocks. She is a typical middle child, looking up to her older brother (Matthew, 9) and taking care of her younger brother (David, 4). She likes watching movies and eating out with her family (Garfield’s and DP Dough are some favorites). Kara also has Down syndrome.
“When we received our diagnosis, we weren’t scared,” Kara’s mother, Kerri, shares. “We were mainly concerned that she was healthy besides. When we found that she was, that was the important thing.
“I definitely had some anger moments, but they weren’t for [my husband] Mike and me — they were for Kara. I knew she would come upon challenges in her life, and it made me mad thinking about some of the things she would have to deal with. I would have my moments of anger and move on — that’s all I could really do.”
Kerri goes on to describe the positive philosophy Mike and she have adopted in raising their daughter. “Down syndrome doesn’t define who she is,” Kerri stresses. “Every child develops differently. We have learned to simply encourage and love Kara, just as our other children.”
Kerri also relishes the role of being an educator for others who might lack facts regarding children with Down syndrome.
“Sometimes offensive remarks are made, and I finally realized that I could live my life shaking my head and walking away angry or I could take a chance to educate someone, change a perception, and maybe start a positive domino effect with information about kids with Down syndrome,” she says. “Living life with a positive outlook is a much happier life to live!”
Sara and John Brownson of Bellefonte had a disparate experience with their son’s diagnosis. Kaleb, now 10, was two-weeks old when tests confirmed he had Down syndrome.
“Even though he was obviously the same child, it was almost like having a new baby,” Sara says. “We had a new set of expectations for what his goals would be.”
Sara and John found they had numerous question marks and didn’t know where to turn. “My mom [a special-education teacher] was a great source of support,” Sara says, “and we moved forward together.”
Now in fourth grade, Kaleb loves being an older brother to Carter, 6. “He’s a great helper,” Sara confirms.
Kaleb has a noticeable happy demeanor (bantering with his mom seems commonplace) and patience (he sat and listened to adults talking for quite some time before it was his turn — no easy feat to be sure!). He loves the arts — acting, music, and singing — as well as school, where he is a thriving student.
The Brownson family’s positive attitude is similar to that of the Weitzels’ — Sara explains that her family has always tried to have a “person- first” outlook. “When people look at Kaleb, I hope they see Kaleb the person, not the Down syndrome,” she says.
Chris and Rob Masters of State College are parents to four children: Bart (24), Stephanie (22), and twins Sarah and Alek (18). After Sarah and Alek’s births, Chris and Rob received word that Alek had Down syndrome.
“There was literature [on Down syndrome] available at the time,” Chris explains, “but it was horribly depressing. We took the family approach that we would prepare for more challenges even though we didn’t know what the challenges would be.”
As the other families have employed affirming attitudes, Chris and her husband adopted the tactic of “when it happens, it happens” as far as developmental milestones for Alek when he was growing up. “It was actually quite interesting having twins,” Chris says. “Sarah would crawl, and I’d worry about Alek and when he would start. Next thing you knew, he’d be crawling, too.”
Alek is like any other teenager — maybe even more polite than some. When he walked into a room while receiving a text message, he read it then quickly put his phone away and left it alone for the duration of the conversation he had. He played cymbals in the marching band at State High and enjoys writing lyrics for songs. “It’s how I express myself when I want people to know my feelings,” he says.
The love and pride his twin sister, Sarah, feels for her brother is obvious even though, growing up, it wasn’t always easy for her. “It was sometimes hard to see the special opportunities Alek had because of his Down syndrome,” she says. “But my mom always reminded me that I had special opportunities, too — they were just different from his.”
Chris shares a story of when Alek and Sarah were much younger. There was a tattling epidemic in their classroom, and the exasperated teacher finally told the students that they were to worry only about themselves. Sarah quietly raised her hand and said, “But I need to worry about my brother, too.”
Even though Alek doesn’t need Sarah’s protection, her devotion to her brother began at a young age and has carried through.
Patrick Northup-Moore, 26, moved with his family to State College from Philadelphia when he was nine years old. Since then, he has become a devoted Penn State sports fan, particularly with men’s basketball — “It’s fast, and I like to watch them dunk,” he explains. He not only serves as one of the mangers during the season but also works in the office handling mailing tasks. In addition, he completes AV setup at the Penn Stater Conference Center Hotel and volunteers once a week in a life- skills classroom at State High.
He takes full responsibility where these jobs are concerned. He calls and schedules all of his transportation through CATARIDE — a subsidiary of CATA that provides curb-to-curb transport for senior citizens and persons with disabilities.
“Patrick is very trustworthy,” his mother, Kris, says. She iterates that Patrick’s iPhone is what makes him as mobile as he is. “We’re always in contact with him.”
When not working, Patrick helps out around the home. He completes yard-work tasks, does his own laundry and dishes, and takes care of the dog by feeding and walking it daily. And in any spare time? “I read the newspaper every day,” he says. “And I like to be on the computer.”
In addition, he loves to listen to music — Bruce Springsteen and Taylor Swift are some favorite artists — and he can reportedly do a mean impersonation of the Man in Black, Johnny Cash.
Patrick has success stories on many levels — one of those demonstrates how far the education system has come in a relatively short 20 years. When he started to attend school, it was just the beginning of students with Down syndrome being mainstreamed.
His father, Pat, remembers sending Patrick to kindergarten. “We took him in for registration, and the teachers and administrator just looked at us, almost confused, asking ‘He can’t go to school here, can he?’ And I firmly said, ‘Yes, he can,’ and that was it.”
Pat adds, “We don’t view him as disabled — but differently abled.”
To be sure, Patrick’s accomplishments are due to his loving upbringing, his dedicated work ethic, and his positive attitude. But some credit also lies within the LifeLink PSU (LLPSU) program.
LLPSU is a partnership program between the State College Area School District’s special- education department and the College of Education at Penn State. In existence since the 2002-03 school year, LLPSU was the vision of Pat Moore (Patrick’s father and SCASD director of special education) and Teri Lindner (a now- retired teacher). It came to fruition and has been successful as a result of the efforts of many people from the school district, the university, and the community.
“LLPSU allows for students with intellectual and physical disabilities to continue their education with age-appropriate peers on a university campus. They have the opportunity to grow and flourish in a rich and stimulating environment,” Pat says.
Another community program that is important in these families’ lives is the Centre County Down Syndrome Society (CCDSS). Gregg Rogers of State College helped start up CCDSS in 2006, one year after his daughter, Genevieve, now 7, was born. He had been exceptionally frustrated with the lack of information he and his wife, Lucy, obtained when they received their prenatal diagnosis of Trisomy 21, which is the cause for nearly 95 percent of observed Down syndromes.
“We were terrified when we received our diagnosis,” Gregg recollects. “We managed to stumble our way through [the rest of the pregnancy] without much help in the way of knowledge. For two pushy ex-New Yorkers, that wasn’t acceptable. We didn’t want anyone else to go through what we went through.”
The mission of the CCDSS, as developed over the years, is to be an informational resource and support provider for individuals with Down syndrome and their families. In addition, they aim to increase awareness and understanding for the populace. One of the ways they do this is through the Buddy Walk.
“My family attended a Buddy Walk at Central Park in New York City, and it was an amazing experience,” Gregg says. “We knew we wanted to bring that here to State College.”
He explains that the Buddy Walk is not only a fundraiser — raising almost 90 percent of the CCDSS operating budget last year – but also an awareness raiser. “It lets people know we’re here, and it helps spark interaction between the community and our families,” he says.
The State College Buddy Walk, one of more than 275 Buddy Walks across the nation, has seen exponential growth since its inception in 2008. What started in a local park with 50 to 60 people attending has grown to more than 300 participants at Medlar Field at Lubrano Park in a partnership with the State College Spikes. Last year alone raised more than $38,000 to help fund local programs, including therapeutic horseback- riding lessons, a book-donation program to the Centre County library system, and several social events for member families and their guests. This year’s event takes place on October 20.
An awareness event, such as the Buddy Walk, can provide a link to educating the public about the realities of Down syndrome. Without firsthand experience, a typically developing person might not see the true talents of individuals with Down syndrome.
That’s precisely why I so much cherish my time with my niece, Elizabeth. She’s kind-hearted. She’s funny. She fills me with elation when she wants to hold my hand. She makes me proud when she reads a book to me. She’s taught me a lot about patience — and that differences between others are good.