When Jill Norton’s younger daughter January was diagnosed with Down syndrome three years ago, she found herself wanting more than the clinical definition of the condition from her doctors.

“I kind of needed somebody to say … she has an intellectual and developmental disability,” she said, “but she will have relationships, she is teachable, there’s a quality of life there that is expected now [in 2015]. None of this was said, and those are important things for the newbie.”

To help other families with children with Down syndrome going through the same feelings and processes, Norton, a resident of Quaker Hill, created the Eastern Connecticut Down Syndrome Awareness, Advocacy & Support group on Facebook two years ago with Amy Dauplaise of Norwich. She said she had met a lot of other families through her experiences, and she wanted to bring them together to support each other.

Norton tried to keep the group membership local to eastern Connecticut, but even that area includes more than 100 people who can be there for each other for whatever they need help with, whether it’s navigating the legalese of disability and education law or just needing someone to talk to.

“When you talk to somebody that knows – I recently wrote a little Facebook post and I referred to them as ‘the initiated’ – you’re talking a different language,” she said. “They know everything about this journey, and they care deeply about your child and you.”

Norton’s first contact, on recommendation from her pediatrician, was Lisa Anfuso of Colchester, whose 22-year-old daughter Taylor has Down syndrome. She said she wanted to help Norton in any way, having navigated the system herself, and a lot of their friendship came through just talking and sharing their experiences.

“If we can give back the way people gave to us, not only with information but their letting us into their lives… that’s really the biggest reward of all,” Lisa Anfuso said, highlighting the importance of seeing the potential that kids with disabilities have. “It’s good to give back, and it’s also good to hear from families with children who are young adults who we can learn from as well.”

Taylor Anfuso works at Mohegan Sun three days a week and volunteers at her former school and her taekwondo studio. She said sometimes people call her “cute” or “sweetie” or think she’s younger than she is, but she enjoys her volunteer work, especially teaching kids taekwondo, and goofing off with her roommates.

Along with some of her roommates, Taylor Anfuso is one of several area residents featured in Norton’s other major project, a book showcasing local families with kids with Down syndrome. She came up with the idea shortly after January was born and put it together on Shutterfly. The book is titled “Welcome to the Family.”

Norton said a book with pictures of kids with Down syndrome to show the positive side of a diagnosis was the main thing she and other families wanted and needed when they first found out. Families in the Facebook group contributed stories and photos of their kids playing sports at school and through Special Olympics, hanging out at the beach or in the snow, and otherwise having fun.

The first run of the book was printed in the fall of 2017, and Norton said the day after the books arrived, she received a call from her social worker at Lawrence + Memorial Hospital asking if she could come to the hospital to speak with a family who had just had a baby diagnosed with Down syndrome. She was at the hospital within the hour, balloons and book in hand.

Heather Imbriale of Waterford, whose daughter Jade is now a year old, said Norton sat down with her and her husband for at least two hours in the NICU, sharing her experiences and answering the questions they had.

“She was wonderful, she was just very honest with us,” she said. “It was just really great to start that network.”

Since then, Imbriale has been more involved with the group, including attending a “Friendsgiving” event with fellow families last year. She said that while the national support groups are helpful, it’s even better to have a local group of people she could meet with or text with questions.

An early goal of the group was to promote advocacy for people with Down syndrome and other intellectual and developmental disabilities. This year, Norton completed her training with Partners in Policymaking, a program through the Connecticut Council on Developmental Disabilities, Disability Rights CT, and the UConn Center for Excellence in Developmental Disabilities.

She said the training can be intense, considering it covers everything from housing and employment rights to the ADA and special education law, but it taught her how to “raise her hand” and advocate for policies that allow people with disabilities to live life on their own terms.

Kerry Sullivan, program coordinator for the Waterford Recreation and Parks Department and a longtime Special Olympics coach, met Norton when she came in for an art class for June, her older daughter, now 5. January was only a few months old at the time, and Sullivan, a self-proclaimed “baby magnet,” immediately spotted her and introduced herself to Norton, asking if she could hold January. She then proceeded to parade her around the community center and shower her with affection.

Norton said Sullivan’s love for January at a time when she was feeling uncomfortable about her daughter’s diagnosis continues to make her heart soar.

Sullivan said her advice to Norton had been not to let anyone tell her what January couldn’t do, and she commended her work in advocacy and community building.

“It’s a shock for any parent, but Jill has embraced it and is there for others,” she said.

“I left the hospital with a desire, and I’ve really been willing it that even if it’s in these tiny, microscopic ways, I am not only receiving support from my local community but I’m also able to give it,” Norton said.

For more information, email ectdsfriends@gmail.com.

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