Growing up with a special needs sibling.
She likes to dance to music, loves dogs, and has lots and lots of friends. Like anyone else she gets hungry and tired, and sometimes needs a little help with things like reading. These are some of the things that Violet Padula wants people to know about her big sister, Bella.
A couple years ago, Violet, wrote all of this down in a book. Handwritten in orange marker and bound by staples, Violet titled her work “My Sister Has Down Syndrome,” (or in her sweet, phonetic 6-year-old spelling, “dawn sindrum.”)
Anyone who’s grown up with a brother or sister knows that there is a special bond between siblings. Growing up with a brother or sister with special needs is its own unique experience, posing challenges and life lessons at the same time.
According to the Sibling Support Project, there are over 6 million people nationwide with special health, developmental, and mental health concerns, and the vast majority of them have typically-developing siblings. So while there’s an ordinariness to this kind of sibling relationship, there’s a uniqueness to it, too.
For the Padula sisters, the sibling bond is truly special one.
When 10-year-old Bella was born, Jessica and Jim Padula were shocked that their child had Down syndrome, but it didn’t change any of their plans.
“It didn’t change that we wanted more kids. I do know that for many people, once they have a child with Down syndrome they don’t always go on to have more kids, but for us, it was never a question,” she said. “And honestly, it’s the best thing for both of them to have each other.”
Just 20 months apart, Bella and Violet have a distinctly close relationship. They’re in dance classes and Girl Scouts together, can play with one another for hours and feed off each others’ wonderful imaginations. Jessica said she’s often struck by how much the girls giggle and laugh with each other.
For 8-year-old Violet, having a sister with Down syndrome has meant that she sometimes takes on the role of “a mini mom,” said her mother, Jessica, even though Bella older.
“Violet will set her alarm and get up and help Bella in the morning. They share a room, and she’ll help her get dressed, make both their beds and help Bella do her hair,” said Jessica. The Padulas never want Violet to feel any pressure to take care Bella, it’s just something she naturally wants to do. She’s fiercely protective and immensely proud of her big sister.
According to the National Down Syndrome Society, studies have shown that children who have a brother or sister with Down syndrome often exhibit a level of maturity above that of their peers. The experience and knowledge gained by having a sibling with Down syndrome also seems to make children more accepting and appreciative of differences. They tend to be more aware of the difficulties others might be going through, and often surprise parents and others with their wisdom, insight and empathy.
By the same token, Violet brings out something special in Bella, too – the nurturing big sister. Just this year when Violet had some first-day-of-school anxiety, Bella took her hand and said, “do you want me to walk you to class?”
“It’s a mutual love,” said Jessica.
Support for Siblings of People with Special Needs
The Sibling Support Project is a national program dedicated to “the lifelong and ever-changing concerns” of millions of brothers and sisters of people with special health, developmental, and mental health concerns. They’ve published books for and about brothers and sisters, host online groups for teen and adult siblings, and present workshops on sibling issues internationally and in every state. Most notably, the Sibling Support Project helps local communities start Sibshops—lively peer support groups for school-age brothers and sisters of kids with special needs. There are 19 registered Sibshops in Massachusetts.
The Massachusetts Sibling Support Network (MSSN) is committed to supporting siblings of people with disabilities by creating welcoming communities for siblings across the lifespan; improving the range and availability of sibling support services; and providing education about sibling-related issues.
MSSN's national partner, the Sibling Leadership Network, provides siblings of individuals with disabilities information, support and tools to advocate with their brothers and sisters. Their main page has information on upcoming webinars and events for siblings, and they also have a Sibling Advocacy Toolkit for those interested in participating in the advocacy process.