Parenting Children with Special Needs
The Truth and Stories Between the Rainbows and Storms
When presented with adversity and unfamiliar challenges, many of us simply don’t know what to do. Facing the challenges of raising a child with special needs gave Blue Springs resident Stephanie Myers inspiration to create a resource of support, awareness, and education for parents in similar situations.
"He was a miracle from day one,” she says of her first son, Brayden. "He spends a lot of his life in and out of the hospital with Chronic Kidney Disease. As a family we helped Brayden get through dialysis 10 hours a day, 7 days a week for 6 months, a complex kidney transplant, post-transplant Lymphoma, and more!” This experience helped Stephanie realize that families raising children with special needs were desperate for support and assistance. In 2010, Stephanie founded the magazine Parenting Children with Special Needs (PCWSN). "I realized that there was HUGE lack of support, resources, funding, awareness, and education for parents that are living in the same shoes as myself,” she says. "After I did the research, I found the defined need for this type of resource was unbelievable. With no such publication printed nationally or locally, the possibility of my idea quickly became a reality.”
The publication, which Stephanie describes as "the truth and stories between the rainbows and storms" was an instant success. “Before I knew it,” Stephanie recalls, “[PCWSN] was being supported by all the Children’s Mercy Hospitals and Clinics, KU Pediatrics, Hospitals all over KC, nearly all local Pediatricians, OT, PT, Behavioral Health offices, The Down Syndrome Guild, and The Special Olympics of Missouri and Kansas.” Every other month, 50,000 free magazines are printed and delivered to Kansas City-area hospitals, medical offices, and businesses. Though it is currently only a local publication, it has received national attention, being voted the #1 Pediatric Resource by US News in 2016 and 2017. The spring 2018 edition will be available online as well, reaching a wider audience to serve even more families in need of guidance, support, and care in their unique situations.
From the start, Stephanie had a clear philosophy regarding the publication:
- Keep the publication free to parents, as most parents raising children with complex needs often struggle financially.
- Get expert editorial content on various topics that affect us, yet are not defined by one single diagnosis.
- Be an outlet to share the raw emotions that come with all stages of raising a child - from birth to grief and everything in between.
- Ensure that the publication's circulation and distribution are in all the right places to be "a support group in the palm of your hand."
- Give an updated list of local resources for all stages of life in every issue.
- Create a presence of awareness through other organizational opportunities and events for families to connect outside of the pages.
- Be honest, reliable, and show love in everything.
- Give as you GROW!
And as the publication gained traction, the resources to give grew as well. The year after PCWSN was founded, Stephanie started a nonprofit charity. “My husband and I wanted to give every penny that the magazine made to others, and pay it forward to other families like ours facing unchangeable hardships,” she says. The PCWSN charity provides funding to assist with individual family needs that meet the criteria for assistance and that are approved by an elected Board of Directors and Officers. The charity, comprised solely of volunteers, has been able to assist with individualized technology needs, mobility assistance, accommodating home renovations, wheelchair lifts, specialized medical equipment, travel for medical purposes, funeral assistance, and more. "We solely depend on sponsors and private donations to make all this possible.” says Stephanie. “All donations, sponsor dollars, and contributions go directly to the grants and programs of families locally who need this assistance."
In addition to this amazing work, Stephanie also served on the Advisory Board at the Children’s Mercy from 2011 to 2015, working to provide family-centered care. “As a parent on the Advisory Board, I was dedicated to helping Children’s Mercy Kansas City continue providing the region’s best pediatric healthcare,” says Stephanie. In this role, she worked alongside hospital leadership to incorporate the perspectives of patients, families, and the community into the care experience.
Stephanie - whose drive is rooted in a strong faith in God and desire to give in any way she can - is also involved with Ronald McDonald House, Blue Springs Rotary Club, Alzheimer’s Association, St. Mary’s Alzheimer’s Support Groups, KC CAN Foundation, Community Service Leagues, YMCA Challenger Programs for inclusive sports, Harvesters, Hope House, Make A Wish Foundation, Cancer Action, Rachel House, and Sandy’s Angels.
Parenting Children With Special needs is dedicated to enhancing the lives of families who have a child with special needs. To learn more, visit www.pcwsn.com