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January 3, 2014

Delhi woman starts project to assist autism families

By Jessica Reynolds Staff Writer
The Daily Star

---- — Local children, families and therapists affected by autism can benefit from what’s in a Delhi woman’s “closet.”

Patti Kruppo is a mom on a mission: to spread awareness of autism spectrum disorders and provide support and resources to all children with disabilities through her nonprofit organization, EVAN and the EVAN lending closet.

Kruppo and her husband, Scott, founded Enlightening Views of Autism Now in 2012. Named after their son, Evan, who was diagnosed with autism at 18 months old, the organization seeks to provide parental support, information on borrowing therapeutic equipment, resources and more to the community.

Last spring, Kruppo started the EVAN lending closet, which has more than 45 pieces of therapeutic equipment that children with disabilities, including autism, can borrow. Kruppo said this allows therapists or families to try out pieces of equipment and determine whether the child can benefit from them.

Statistics from the U.S. Centers for Disease Control and Prevention identify one in 88 American children as being on the autism spectrum.

After learning about different therapeutic equipment that could be helpful for autistic children, Kruppo said, the family had a difficult time actually getting the equipment for Evan to try. Because every case of autism is different and each child learns differently, Kruppo said, equipment didn’t always work for Evan. For instance, Kruppo said weighted vests, which help some autistic children relax and feel calm, do not work for her son.

“We would continually spend money on sensory integration equipment that would not work but we had no place to borrow it from to try it out,” Kruppo said. “We also would have to wait for months to get coverage by insurance for equipment that we felt Evan could use right away. We want to help other families, so they don’t have to go through what we did.”

This, she said, is where the EVAN lending closet comes in.

Kruppo said the lending closet gives families time to secure funding, either through insurance, grants, or their own money, without losing valuable time for the child to benefit from the equipment. Families can also donate equipment back to the closet if and when the child outgrows it.

“If a child is not able to regulate their sensory system, they will have a difficult time learning,” Kruppo said. “With the lending closet, we are able to assist parents in helping by giving sensory input or by using calming activities if the child is on sensory overload.”

Available equipment in the lending closet includes balancing seats, weighted belts, blankets and vests, noise reduction and cancellation headphones, balance beams and stepping stones for balance and coordination, mini trampolines and crash mats, tools to help with fidgeting, a swing and a deep-pressure steam roller, a takeoff of the “hug machine” invented in 1965 by Temple Grandin.

Along with the lending closet, EVAN recently installed a sensory room which has permanent therapeutic equipment that, Kruppo said, would be difficult to hook up in a home, especially if it didn’t end up being beneficial for the child.

The sensory room features a ball pit, crash mats, stepping stones and stationary equipment, according to Kruppo. She said the EVAN crew is in the process of hanging hardware to have a swing system in the room, as well. Kruppo said that other than herself, there are two therapists who use the room.

According to Kruppo, EVAN functions under the United Ministry Church in Delhi, where both the lending closet and sensory room are located. Kruppo said she was thankful to the church for donating $3000 to EVAN to buy equipment for the rooms. Kruppo also said she could not run EVAN without her devoted committee members, Amy Andersen, occupational therapist Mindy Small, physical therapist Libby Lepinnet Kelly, Madeleine Helo and Amanda Mitchell.

Along with providing families with therapeutic resources and hopefully saving them time and money, Kruppo said, she hopes to simply “be there for them.”

“Even if it’s just to talk,” Kruppo said. “We have been through it. I have sat through a lot of conferences about autism spectrum disorder and different therapies and interventions that sound good, but it is completely different to be able to talk with someone who knows the reality of the situation and has truly been there.”

Kruppo said EVAN holds an event every April to bring awareness to autism, as well as a couple fundraisers throughout the year to aide in the continual growth of the lending closet. She said she hopes to do an autism awareness walk in 2014.

“We don’t have a lot of local resources for children with disabilities,” Kruppo said. “I want to be able to give money to families for therapies that are beneficial but hard to get grants for, like swim or music therapy.”

Cathy Johnson, publicity woman for The United Ministry Church in Delhi, said the lending closet has been well-received by the community.

“It is meeting a need that hasn’t been met before around here,” Johnson said. ‘There has been a lot of interest and support.”

Kruppo said, more than anything, she wants the community to know that children with autism are special and have a lot to contribute to society.

“We just need to pay attention so we don’t miss what they are teaching us,” she said. “I want our community to know how valuable our children are, disability or not, and that the disability of autism is part of who they are, but not all. It shouldn’t define them.”

Anyone interested in using the EVAN lending closet or sensory room can reach the organization at 746-2191, extension 208 or at evanlendingcloset@gmail.com.