A Parent’s Perspective: Educate and Advocate

When Lisa Seguin’s twin daughters were born in 1998, one of the girls was diagnosed with Down syndrome. She recalls, “I felt it was necessary to learn as much as possible and to find a path of acceptance for my daughter.”

Lisa began by networking with parents in similar circumstances, people who had learned effective ways to cope with medical issues and knew the “ins and outs” of the education system. And, like many other parents in her situation, she got involved. She was part of the local Early Intervention Committee and also joined the Family Support Services Council.

Lisa’s experiences prompted her to start a new career that gives her the chance to help people with disabilities. She was recently promoted to the position of Senior Service Coordinator with ARISE, a non-profit agency that provides advocacy and services for people with disabilities.

Now, more than a decade later, parents of children with special needs still face challenges, but the work of Lisa and others makes it easier to find support than in the past. One way for parents to learn from others, and perhaps make some new friends, is by attending ARISE’s upcoming “Dine & Discuss” series. The series, which take place one evening a week for eight weeks, gives parents a chance to have dinner, learn coping and de-stressing techniques, and gain information and support from other parents who are in the same situation.

A key feature of ARISE’s “Dine & Discuss” series is that parents can bring their child who has a developmental disability with them. While parents are relaxing over dinner, their children attend a structured Social Skills Group, a place where they learn to enhance their communication techniques, engage in cooperative play, and identify and understand their emotions.

Lisa Seguin’s daughter, now eleven years old, receives support to build the skills she needs to live as independently as possible, and also participates in a recreational respite program. The combination allows the ‘tween to take swimming lessons and attend social events with other youth.

Lisa continues to advocate for programs that support the parents of children with disabilities. She advises other parents to “learn about the medical challenges, but always remember you need to look beyond the diagnosis and see your child as a child first.”

ARISE’s “Dine & Discuss” series kicks off on October 14 at 5:30 p.m. at the agency’s Oswego office. To learn more or register, contact Maria Ponzi at ARISE at (315) 342-4088, ext. 242.