Danbury Student Launches Down Syndrome Hotline

DANBURY, CT — Danbury High School senior Olivia Alessandro's brother, Luke, now 10, was diagnosed with Down syndrome at birth. Growing up she had to learn about how his special needs affected her in the School of Hard Knocks. Now she is making those hard-won insights available to the brothers and sisters of children with Down Syndrome through “Siblings’ First Call,” a nationwide hotline she has started.

While there is help available for parents from a variety of agencies, including there is little support available for brothers and sisters who could use just a little insight. Olivia said she learned the ropes mostly on her own with her brother, but as a school Peer Leadership project, she wondered how she could use her experience to help other siblings.

The program is being sponsored by the Down Syndrome Association of Connecticut (DS ACT), and was launched on March 21, World Down Syndrome Day. According to the organization, the hotline provides support and guidance for those who have a family member with Down syndrome. The hotline number is (888) 486-8573 and general questions can be emailed to siblingsfirstcall@mydsact.org.

“I think it is important to share the experience of having a sibling with Down syndrome and show that their diagnosis will not define them,” Olivia said. “They, too, can excel in school, be social and important community members. These are the expectations that my family has for my brother. Hearing how families work with their children may lessen any fears and feelings of the unknown they may have for their new siblings.”

Olivia’s new responsibility is to take phone calls and answer questions, offer support and link experienced siblings with siblings who have a new brother or sister with Down syndrome.

She explained that her brother does the same things as everyone else, but he sometimes just needs more time and, therefore, more patience and understanding from his sister. Olivia said that parents new to DS are often bombarded with issues regarding their child, such as heart or thyroid problems, and they may not have time to help their other children adjust. That’s why having the support of someone who can relate to the experience is so important.

“Within the first day of launching the support program, I received an email from a local family with a new baby with Down syndrome who wanted support for the older siblings in the family,” Olivia said. “This shows the need for the program was immediate. I am very excited that this project is beginning to make an influence on my statewide community.”