Michael Davis Photos
Roberta Abreu, with husband Josh and son Lucas, age 9 months:
“He sits up and can roll over, which people told us he might not ever do. So we never say never.”
Roberta Abreu did everything by the book when it came to her pregnancy—which made the sonogram images of her son, Lucas, that much more difficult to bear.
The baby was missing nearly half of his spine and did not develop a sacrum—the bony structure that joins the spine to the pelvis.
By the time Lucas was born, Roberta and her husband Josh had a diagnosis: caudal regression syndrome. And when they brought their baby boy home, after 17 days in the neonatal intensive care unit, they had little more than a grim prediction: “Don’t expect him to ever walk.”
“It was such a rare thing; there is no doctor locally who knows anything about this,” North Syracuse resident Abreu says. “Everything was so unknown … it was horrific.”
Families need support of all kinds—physical, emotional, financial—throughout the life of a special needs child. The questions begin at birth, or earlier: Where will my child go to school? How will I pay for his care? Will he make friends? How have other people gotten through this?
Raising children with special needs requires patience, tenacity and strength that many parents didn’t know they had. But they are not alone. There are many local organizations working to connect families with the resources—of all kinds—that they need.
Abreu, who also has a 13-year-old stepdaughter, felt lucky to have supportive friends and family nearby. But the costs were piling up. Lucas, now 9 months old, has three to four medical or therapeutic appointments a week. His legs are constantly being refitted for AFOs: ankle-foot orthoses with plaster castings. He wears a special brace to hold his legs apart. When he goes to school, he will probably be in a wheelchair most of the time.
“He is 100 percent disabled, but we were not eligible for any help,” Abreu says.
Then a friend found Charity for Children Inc., a locally based non-profit organization dedicated to providing financial and educational services to families with children who suffer from disabilities, diseases and disorders.
Abreu wrote an e-mail to CFC executive director Nina Albino explaining Lucas’ condition. “She wrote me back the very next day and asked, ‘What can we help you with?’” Abreu says.
Albino started Charity for Children in 2004 with people like the Abreus in mind. “For families with a chronically ill or disabled child, there is never enough money,” she says. “I felt there needed to be an organization that was child-specific, not disease-specific. We help children with any illness.”
Charity for Children has assisted about 70 families in the Central New York region so far. Many of those requests for help have launched ongoing relationships. Abreu says although she and Albino have never met, Albino has taken a personal interest in Lucas’ care. “She’ll call and ask how things are going, which means a lot.”
Abreu also has help from Exceptional Family Resources, which assists families needing rehabilitation services, recreation programs, advocacy and support. But she has yet to find a support group that she feels comfortable with. Because Lucas has no developmental disabilities, Abreu does not share the same issues as parents of children with conditions such as spina bifida (for which there is a support program at the Golisano Children’s Hospital at SUNY Upstate Medical University).
And access to a social network is crucial for families of seriously ill or disabled children. Isolation is a major problem for caregivers, says Albino. Often, after the family settles into the routine of care for a disabled child, extended family and friends back off, assuming that the family no longer needs as much help. Fearing rejection, or not wanting to “bother” their loved ones, parents sometimes do not ask for the help they need.
“Sometimes, what these parents really need is someone to stop in and say ‘hi,’ or even just a phone call,” says Lory Matthews, director of Hope Network, a support system of volunteers and resources for families of children with special needs based at Northside Baptist Church in Liverpool.
Hope Network is currently working with about 100 families of all faiths. General support meetings are held twice a month. Programs include an inclusive playgroup for children under 3, music and movement classes, monthly respite care days, and information sessions on topics such as Medicaid and financial planning for special needs families.
Matthews says the opportunity to socialize is the most important service Hope offers. “The support group is not specific to one particular condition, but these parents share common ground,” she says. “And the social opportunities benefit everyone. We have picnics in the summer, holiday parties. The children get to know each other and you have a family dynamic that is nurturing. For the children, the focus is no longer on their disability. Differences disappear.”
Lori Sill remembers getting a phone call from a parent of a Down syndrome child while she was in the hospital after the birth of David, her older son. That simple gesture meant a lot. “It’s the most amazing grief when you first find out that you have a child with Down syndrome,” Sill says. “But when I held him for the first time, I thought, ‘OK, I can do this.’”
Sill says the Down Syndrome Association of Central New York and Hope Network have been crucial in building a strong social and spiritual foundation for her family. She has been active with DSA of CNY for about 10 years, and Hope for two years. DSA of CNY provides education and support to families of children with Down syndrome, often starting right after the birth of their babies.
“(We) think it is important to get that information into people’s hands as quickly as possible,” Sill says. “It’s a proactive approach.”
David’s first years were difficult. “I didn’t know a soul when he was little,” Sill says. But her initial concerns about David fitting in proved unfounded. Now 13, David is a popular playmate in his Liverpool neighborhood, a successful student at Morgan Road Elementary School, and he has a close relationship with his younger brother, Michael.
David has also found friendship and recreation as a competitor with the Special Olympics and Challenger Baseball, a Central New York league for young people with disabilities.
Tracking down appropriate services for a child, especially one with several disorders, can be a family’s most significant challenge.
Cicero residents Linda and Tommy Echols became grandparents to a baby boy, Scott, in 2000. What they didn’t know was that the baby had developed an addiction to crack cocaine and fetal alcohol syndrome while in the womb. When Scott was 8 months old, the Echolses were granted legal custody, and they adopted him at age 3.
Some of Scott’s physical challenges were evident during that first year. Echols was able to get Scott therapy through Exceptional Family Resources, which lasted until he was about 3.
By the time he was a preschooler, Scott’s developmental and learning disabilities became more apparent. He was diagnosed with Asperger syndrome, ADHD (attention deficit hyperactivity disorder) and obsessive-compulsive disorder (OCD)—all of which contributed to behavioral problems.
By then, Echols had met Matthews of the HOPE Network. The two forged a spiritual bond and a plan to get Scott more therapy. They visited different programs, and found SPICE, a special education preschool program sponsored by the Elmcrest Children’s Center in Syracuse.
“The SPICE program is geared toward behavioral problems and it is a wonderful resource. They really brought him out,” Echols says. “Scott went from a shy child to a boy who began to love people.”
“He still has his moments of anger but he has come a long way,” Echols says. “He is a third grader in a special ed inclusion program at school and has become a very good reader. I’m really proud of where he is at.”
Today Echols, mother of two grown children and grandmother of two other children, is a parent advocate for the HOPE Network. She urges parents to get a service coordinator through their county office of developmental services. “It’s very important for parents to know that they can get these services. But too often nobody helps them.”
“Most of my family is in Louisiana, so I didn’t have a lot of people to turn to when we first got Scott,” Echols explains. “Caregivers are dealing with issues that you don’t just share with anybody; you don’t know what it’s like to have a special needs child unless you have one.”
Those who provide services to caregivers acknowledge the work can tax their own emotional resources, but they gain strength in knowing that even a small suggestion, or a little bit of their time, can help.
“I cry every day at my job, and they cry too,” says Albino of Charity for Children. “Some of these parents prayed for a long time for a door to open, and sometimes we can really make a significant difference in their lives. That is the reward.”
Matthews, a former nurse and physical therapist, says, “When I was doing physical therapy, I’d hear the stories of parents being told, ‘There’s nothing you can do.’ So I would emphasize the things the child could do. Families have to have hope that their children can progress.”
Abreu says she is encouraged by the milestones Lucas has reached in spite of his physical limitations. “He’s such a strong little boy. I have every hope that he will walk,” she says. “With the physical therapy, he has already come so far. He sits up and can roll over, which people told us he might not ever do. So we never say never.”
Sill, too, gains strength by seeing how much her son is able to do. The love and support she has found in the community have also given her courage. She treasures the lessons she has learned in her journey as the parent of a disabled child.“David has affected people in so many ways,” Sill says. “It is a blessing every day, and I wouldn’t have changed a thing.”
Lori Sill, with sons Michael, age 11, and David, age 13: “David has affected people in so many ways. … It is a blessing every day, and I wouldn’t have changed a thing.”