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Nonprofit offers resources to help parents of special-needs children
BRANDON KLEIN
Special to the Legal News
Published: February 12, 2020
Being a parent of a child with special needs can be challenging and while there are many resources to help the child navigate life, there aren't many resources to help the needs of the parents.
Enter Emy Trende.
Trende founded the nonprofit The Mother Ship organization in 2015 to fill a perceived gap in resources and support for people who take care of loved ones with developmental, genetic and behavioral disabilities.
Trende has three sons, with her oldest diagnosed on the Autism spectrum disorder. She moved her family to Ohio because there were better resources to meet her son's needs.
A health-care attorney, Trende, however, said it was a different story for the caregiver population.
She previously attended events marketed towards caregivers, but saw them as conduits to assisting special-needs children and other dependents.
"I noticed there seemed to be a world of resources to support special needs," she said. "There was a complete absence of resources for caregiver needs."
Parents and caregivers of children with special needs often experience financial, marital and emotional burdens, Trende said, and sometimes experience a grief from a life-changing event they did not anticipate.
Trende has met families where such situations can stress marriages to the breaking point since some parents are not up to the task of raising a special-needs child.
But what triggered Trende to start The Mother Ship was a New York Times article about a mother who harmed herself and her special-needs child.
"Somebody should do something," Trende said. "If nobody is going to do this, I guess I will."
The Mother Ship is a volunteer-run operation. Members include Michelle Ellis, executive director of programming and outreach; Kelly Leahy, board president; Elaine Borling, board secretary; and board members Kathryn Clausen and Jordan Cole.
The board's early initiatives included community walks in the park and art therapy sessions to give caregivers an opportunity to share their stresses, comforts and solutions with each other.
"We are open to all types of special needs, be they developmental, mental health, medical, genetic, behavioral," Trende said. "The one area where we are generally less involved is cancer, as there are organizations in our community that focus solely on families impacted by cancer."
Additionally, the organization awards caregivers a grant for self-improvement. Caregivers can use the grant to go back to school or to hire assistants to help care for their loved ones while they recover from surgery.
The grants are limited to $500 per recipient and cannot be used for needs such as paying bills.
In December, the organization awarded 24 grants worth a total of $3,500.
"Our No. 1 challenge has been getting parents who need the help, to actually reach out for it," Trende said. "We're looking for caregivers who want to take that empowering step."
She said caregivers do a lot of work outside of their current jobs, including setting up appointments with doctors and schools.
"It will go on through the course of life, assuming your child outlives you," Trende said.
She knows first-hand how much time is needed to care for a special-needs individual. She and her husband spend a lot of time taking their son to clinical trials and other therapies.
"How does anybody work at all?" Trende said. "Luckily, my husband has a job where he works from home."
If they didn't have that flexibility, "I don't know how we would make it work," she added. "I have to work in such a way to retire for three people instead of two."
But they understand there are some people who faced similar challenges, but lack a college education or a job that provides work-life balance.
The Mother Ship will host its annual Prom for a Cause event with a Mardi Gras theme at the Worthington Hills Country Club later this month to raise money for the organization's grants.
"They're developing skills that make them more effective contributors, not only to their child's life but to the whole community," Trende said.
Autism affects nearly one in 59 children and for every one girl, four boys were identified on the spectrum, according to the Centers for Disease Control and Prevention.
Ohio was among nearly 20 states with the highest prevalence of adolescent Autism rates that ranged from 1 to 2 percent, according to 2014 data the U.S. Department of Education collected.
The Franklin County Board of Developmental Disabilities provided services to more than 20,000 children and adults last year.
For more information visit themothershipinc.com.
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