Families raising children with Down syndrome find local, national support
By Kara Bettis | January 22, 2016, 11:35 EST
BOSTON – When Carl and Julie Stone discovered four years ago that their third child, Josiah, would be born with trisomy 21, or Down syndrome, they didn’t blink.
“It didn’t frighten us, it didn’t scare us, it didn’t make us sad,” Stone said. “We simply wanted to spend the last 20 weeks of the pregnancy doing everything we could to give this child every possibility to succeed.”
The Carver resident’s story is not unusual. But it isn’t common, either. Many expecting families who discover the child might be born with trisomy 21, a form of Down syndrome that comes from having an extra chromosome, don’t know where to turn, or what kind of life to expect for their baby.
In Massachusetts, about 5,000 families are raising children who were born with Down syndrome, and around 95 babies annually are born here with an extra chromosome each year. Although some families say that finding support in the medical field or school systems can be a challenge, the Bay State has gone to great lengths to offer resources for pregnant couples and families raising children affected by the condition.
“It is absolutely invaluable to connect with other parents when you’re on this journey,” said Sarah Cullen, family support director for Burlington-based Massachusetts Down Syndrome Congress, which works with 130 new families each year, including more than 30 prenatal cases.
The resource group uses a program called First Call to offer information to new or expecting parents, and if desired, to connect them with 50 parents across the state who have children with Down syndrome. The group’s programs have been so popular that they have held training sessions in 13 states.
Other local support groups are making an impact on parents. In Boston, four mothers with the Heartbeats for Down Syndrome group personally deliver care packages to families with children facing serious health issues and extended hospital stays. Boston Children’s Hospital’s Down Syndrome program offers in-depth medical and holistic resources. Many towns have their own support groups of families who gather for playdates and outings.
When Michael and Becky Robichaud of Concord discovered that Alex, the youngest of their five children, was going to be born with Down syndrome, they mostly encountered pessimistic doctors, books and websites. However, friends and family gave them support, including several other local families raising children with Down syndrome. They also discovered Learning Program Boston, which provides quality education for children with Down syndrome.
Alex, now in 5th grade, is passionate about science and wordplay, plays drums in the school band and spends his afternoons with horseback riding lessons, bowling and the Boy Scouts. Becky Robichaud said that while she has realistic expectations for Alex’s behavior and future, she doesn’t presume any limits.
“Don’t treat Alex any differently – we have the same expectations for behavior and schoolwork. All of my children are different and have different levels of abilities,” she said.
While people with Down syndrome often face different health risks and developmental challenges compared with those who don’t have the condition, ultimately, daily life is the same. To Julie Stone, Josiah “is a typical 4-year-old,” who loves music, reading and playing with his best friend or his two older brothers, she said.
“He can be very stubborn, but he is the most loving, accepting and forgiving child I have ever met,” she said.
Blogging parents have also created an extensive nationwide community for families to connect or read about those who are years ahead in their life’s journey. Stephen and Erika Jones began blogging at “Team Jones 4” when they learned that her second daughter, Abigail, would be born with Down syndrome in addition to heart and kidney defects.
After mourning the loss of “normalcy,” the Joneses then learned that Abigail also had a massive brain tumor that would be untreatable and fatal, if she even survived childbirth. Their story went viral in October after Abigail, now almost 6 months old, underwent a successful surgery at Boston Children’s Hospital. With a now healthy daughter, the Joneses have found support through both online and local groups in Jacksonville, Florida, Erika said in an interview.
“We wanted Abigail’s life to have a purpose. We knew even if she was born and died very soon after, we knew she had a purpose,” she said. “I get excited when I think about our future instead of getting scared. There’s a lot of great things that would make her life amazing.”
A Children’s Hospital study released in 2011 found that 79 percent of families said that their outlook on life became more positive after the arrival of a child with Down syndrome. It also showed that 97 percent of siblings were proud of their brother or sister with Down syndrome, and 99 percent of adults with Down syndrome said they were happy with their lives.
“He’s made me a better person,” Becky Robichaud said of Alex. “When you have a child who has a need, you look at things differently. Your priorities change for the better.”
Stone agreed. Her motto is simple. “Josiah does not have an extra chromosome,” she said. “We are all missing one.”