pioneer parents in indiana By Angela Arlington about Denise Arland

Denise Arland was working as an administrative assistant for the superintendent of Greenfield-Central Community Schools when she got pregnant with quadruplets. Denise reflects, “Little did I know all my interactions and relationships with school staff would play a BIG part in my future! It definitely helped as we got started in school.”

It was 1994 and First Steps was not required to provide services in the children’s natural environment. There were only 16 kids in the program in Hancock County, so Denise’s sons made up 1/4 of the population being served. “We got developmental therapy for all four boys at home but had to take them to a center operated by Shares for their other therapies. Shares also ran a developmental preschool for the First Steps kids, so they attended that from about 18 months until they were 3.” Parents passed each other on the way in or out of the building, but didn’t really meet. “We did not get a chance to talk because we were in the therapies with our kids trying to learn from the therapists,” Denise recalled. It was at this time she became friends with another mother, Amy Borgmann. Denise and Amy sat on the local First Steps Council as parent representatives. “In those meetings, they talked about how nice it would be to have a group where families could actually meet and talk with each other. Amy and I both agreed this would be great, not realizing they wanted us to run it!” It was the beginning of a new role for Denise that would last for over 20 years.

Her sons had different needs and diagnoses, and it was a challenge to balance life with four busy toddlers. “A couple of them got PT and OT. Eventually, they all got speech therapy for a while, but I believe that was not until they got to preschool. I remember having a speech therapist or two in First Steps, but it was very hard to find so we didn’t get a lot of that. Lucas’s needs were not as intense as the others, so his therapies dropped off the fastest. Diagnoses came at different times. Zach’s and Matt’s cerebral palsy was diagnosed around age 3. When they transitioned to public preschool, Jacob and Lucas had developmental disability diagnoses, but back then when they turned 5, they needed another eligibility category to keep an individual education plan (IEP). It was at that point that Jacob got his autism diagnosis, and Lucas had significant ADHD, so he qualified under ‘other health impaired’. So they all had IEPs throughout their school years.”

“We started out as an organization focused on connecting families of young children to other families for support and encouragement,” Denise said. “That actually created our name, Families United for Support and Encouragement – FUSE.” It was 1996, and the support group had help from First Steps providers and the public school special education co-op. Between the two groups, they provided free space to meet, snacks, childcare, and even newsletter mailing. Denise took on the role of running the group meetings, and Amy provided support services and started the newsletter.

Soon Denise would have another son, Nick, who was born in 1997 when the quadruplets were 3 years and 9 months old. Nick never needed any services.

During this time, people started calling Denise at home and asking questions, and FUSE was becoming more than just a monthly meeting of families. “We decided it would be a good idea to form a non-profit so we could raise funds to provide for our own needs and not rely so much on First Steps and the special ed co-op. A group of parents who were regular participants agreed to be the board of directors. We officially became a nonprofit in April 2000, exactly four years to the month we started our informal meetings!”

FUSE has grown tremendously over the years. They operated with volunteer staff for ten years, and in 2006 began transitioning to paid staff with Denise as part-time executive director. In 2009 Amy became development director, creating the fundraising side of the nonprofit. FUSE is now operated by one full-time executive director and two part-time staff. The group gets funding primarily from individuals, community organizations, and companies that sponsor programs and fundraisers. Grant writing is done on a small scale. Each year FUSE has three large fundraisers so it can provide programs at little to no cost, and continues to evolve based on the changing needs of the people served. Denise explained, “Before we knew it, the kids we served as babies were adults! Now some of them are on their own, navigating adult systems and services, so we learned about those systems and continued to serve those young adults and their families. Mental health calls also increased as we worked with older kids and adults. In 2018, we adopted a new mission that reflects our evolution. Our new mission statement is, ‘FUSE empowers families and individuals with disabilities and mental health needs by providing information, training, support, and encouragement.’”

FUSE changed Denise’s life both professionally and personally. Professionally, working in the nonprofit world made her life more fulfilling. She has met hundreds of families that she never would have met otherwise. “I have learned so much from each one of them as I talk to them about their children, their disabilities, their successes, and their challenges,” she said. “I’ve established relationships that I will always treasure. Those parents and adults with disabilities have inspired me to be able to help my own children with their challenges. From them, I got the strength to keep going and not give up when things with my own kids got tough.”

In 2019, Denise’s husband had a chance to move to Chicago for a job opportunity. Her youngest son was in college, while the quadruplets were still living at home. Three of the quadruplets receive services through the Medicaid Waiver. “What I learned through FUSE shaped my vision of their future and helped me to see that big things were possible, including independent living,” Denise said. “When we announced our move, they were 25 years old, and we gave them the option of staying in Indiana or moving with us. They all chose to stay in Indiana, so we figured out what their independent living situations would look like. It is so gratifying to say that they are all successfully living on their own!”

All of her boys have managed through the pandemic with flying colors. Denise smiled, “When I think back, I see how important the empowerment has been, for us as their parents and for them.”

More information about FUSE can be found at www.fuseinc.org or by calling the FUSE office at 317-462-9064.

If you would like to be a part of this Pioneer Parent section or to nominate someone else to be in an upcoming issue of Special Needs Living, email us at SpecialNeedsLivingIndy@n2pub.com.

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