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One exceptional support system: Exceptional Parents Unlimited

Nov 19, 2014 02:48PM, Published by Cen Cali Life Magazine, Categories: Health+Wellness, Today, Arts+Entertainment



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One exceptional support system: Exceptional Parents Unlimited

by Don R. Simmons

Photos by Dan Minkler & EPU

Families with children with special needs often feel a host of emotions. Alone. Isolated. Afraid. Disappointed. They may feel there is nowhere to turn.

For the past several years, families like these have turned to Exceptional Parents Unlimited. Established in 1976 to support parents of children with Down syndrome, EPU has grown from a support group with eight families to a nationally recognized program providing a range of services to thousands of families facing medical, developmental and parenting challenges. It is funded by a combination of grants, donations and contracts. Services are provided to families at no cost.

Jane Feist and her daughter, Teagan, 17, are among those who have looked to EPU for help and benefited greatly from its services and programs.

"Having a child with special needs can be frightening, and EPU provided wonderful support for us and helped us adjust to our new normal," Feist said. "Teagan loved EPU and thrived with their help. Instead of dreading the ‘work’ that she had to do at EPU, Teagan would frequently ask, ‘When are we going back to EPU?’" 

Feist credits EPU for the remarkable strides Teagan has made, both in terms of her confidence levels and her education.

"It is incredibly hard in the beginning. There is grief that this is not the child you expected, not the life you had planned out for you or your child,” Feist said. “But EPU walks with you every step of the journey. They are there with the support you need. I am in awe of the work that they do for families."

Kelly G., a single mom with a special needs child who is almost 5 years old, has been similarly impressed by what EPU can help families accomplish. She said her daughter, whose birth mother abused drugs and alcohol, was developmentally delayed and didn't speak for several years.

“Now, she's talking, laughing, getting into mischief like any 4-year-old,” Kelly G. said. “This wouldn't happen without EPU, especially the home visitors who provide therapy at our house when we cannot get to the center."

Children with special needs are often the victims of abuse and neglect at the hands of desperate and distressed parents. A special call line set up by EPU has emerged as a critical lifeline for these families.

"Many times, parents are at their wit's end and feel such frustration with their child and with themselves, we will receive desperate phone calls," Price said. "EPU's One Call for Kids can help provide initial counseling, referral and assessment that can sometimes save the life of a child and help the entire family to begin to cope with the stress."

EPU was founded by Marion M. Karian, a nurse specializing in genetics. Karian “was very aware of the fear and sadness that these parents were facing,” said Price of the eight families that moved Karian to establish EPU. “She saw the need firsthand and knew that she had to do something, so she started the support group.”

Price said Karian chose the name “Exceptional Parents Unlimited” because she wanted to support parents of children with all kinds of special needs.

While EPU serves families facing unique challenges, the organization’s work affects the entire community, Price said.

"These are our children, our families," she said. “The work of EPU touches every part of our community."

And as the population that EPU serves continues to expand, community support – especially financial – is needed now more than ever.

"We now face issues like pesticide poisoning that impacts the health of pregnant women and infants, toxic shock, domestic violence, lack of adequate prenatal care in rural areas, deeply concentrated poverty, poor nutrition – all of these factors make the work of EPU the work of all of us," Price said.

As you think about ways to give during the holidays, consider EPU. There are many ways you can show support:

--Make a financial contribution.

--Donate your vehicle.

--Contribute to the purchase of a van or fuel for EPU's network of home visitors.

--Be a "professional partner" by donating services such as photography, graphic design, childcare, financial planning or family support.

--Donate children's books, puzzles and toys for families participating in EPU programs and services. 

To make a contribution or donation, or for more information about EPU, visit epuchildren.org or call Kathleen Price at (559) 229-2000 Ext. 136.

###

Don R. Simmons, Ph.D., is a Distinguished Lecturer of Humanics at Fresno State.



EPU Exceptional Parents Unlimited


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