‘They get it’

GREENFIELD — Bernadette McDonald calls them her lifeline.

The people she has met through FUSE (Families United for Support and Encouragement) have walked beside her for more than a decade as she encountered countless challenges of raising a child with special needs. The nonprofit aimed at uniting families of children with disabilities gave her a place to share frustrations and fears, joys and successes.

McDonald of New Palestine was among about 400 people who attended the 10th annual FUSE Inspiring Abilities Expo on Saturday at Greenfield Intermediate Center, an event that brings together parents of children with disabilities and services and organizations that seek to assist families facing a unique set of obstacles.

Nearly 60 vendors signed up to set up booths about their services for the Inspiring Abilities Expo this year, and the services ranged from sports teams for children with disabilities to assistance with health insurance.

McDonald’s 16-year-old daughter, Elizabeth, has a rare genetic disorder, Trisomy 9, and is nonverbal. Her mother serves as her advocate, making sure her daughter is properly cared for at all times. It’s a full-time job, one made easier by access to services brought together at one event, she said.

McDonald said FUSE has guided her through tough challenges, like figuring out how to protect her daughter’s rights and making sure she knows the details of what goes on during Elizabeth’s school day.

The organization puts resources in reach, but it also forges friendships among parents who know where McDonald has been.

“It’s the feeling of, ‘Oh my gosh, they get it,’” she said. “Knowing you have that support is unbelievably special. It’s acceptance you don’t always get.”

Denise Arland, FUSE executive director, said every year, the expo reunites old friends but also uncovers local families who have never heard of FUSE or any of the services that join it at the event. FUSE members are always excited to bring those services to families who need them.

Arland and Amy Borgman co-founded FUSE 20 years ago this April. They met at a parenting group, where they were the only parents they knew with children with disabilities.

Borgman feels fortunate FUSE has sustained itself for two decades, as many grassroots efforts tend to fizzle out more quickly, she said. She looked to the healthy attendance at Saturday’s Expo as an indicator that their organization is still needed, despite the ability to Google most questions parents might have.

The organization has 15 board members and reaches about 1,000 families a month through its various training and outreach efforts. FUSE offers group meetings, Webinars and events that address topics their families face, including health needs, behavior changes and life skills development.

While FUSE works with its families year-round, the expo is an opportunity for one-stop shopping for those in need.

Many of the vendors at the expo sought to assist families in the confusing process of establishing children’s rights at school.

Christine Bivens of IEP Services LLP said understanding the processes the education system has in place for children with disabilities can be overwhelming and frustrating.

In addition to the vendors, this year’s expo also offered four guest speakers; their topics included bullying prevention, managing emotional mayhem, vocational rehabilitation, and visual support systems.

Beth Waite-Lafever presented “Visual Supports in 10 Minutes.”

She said having visual references for things like checklists can help children and young adults with disabilities. For example, a young adult could use a visual schedule to remind them of the steps of getting dressed.

“It increases their independence to have a visual routine in place,” Waite-Lafever said.

She recommended a few computer programs to help parents with their organization of visual schedules.

Arland said there has been a massive shift in how parents learn since FUSE began two decades ago.

When parents wanted information, they used to pass around a big file folder, and put a post-it with their addresses on whatever they wanted, and then Arland and Borgman would send them copies of the information through the mail.

Borgman said most parents learn online now, and FUSE has adjusted by offering more webinars, because it’s harder to get people to come to training in person.

“The fact that you can get people to come out (to the FUSE expo) shows the need there is for this in the community,” she said.

Author photo
Rorye Hatcher is a reporter at the Greenfield Daily Reporter. She can be reached at ​317-477-3211 or rhatcher@greenfieldreporter.com.