The vinyl chair with shiny chrome wheels sat idle for weeks. Crafted like a stroller but with the practicality of a wheelchair, it was designed for Traci Castles’ four-year-old son, Joshua. But Traci couldn’t bear to use the chair until her friend Sue said, “You know, I’ve never liked my child’s wheelchair either. Just because you need it doesn’t mean you have to like it.” That day Traci gained much more than relief from an aching back. She found a mentor.

Traci Castles understands the benefits of mentoring. In fact, you could say that she wrote the book on it. After co-founding the Oklahoma Family Network (OFN), a parent-to-parent group advocating family-centered care for those raising children with special health care needs, She founded OFN’s subsidiary, the Special Parents Access Network (SPAN). The strength behind OFN is a volunteer network of parent-to-parent mentors, each of whom follows the mentorship training manual written by Traci after months of research from other state’s parent-to-parent programs.

Traci and her husband Jed, a News 9 meteorologist, have three children: 12-year-old Ciara, ten-year-old Hannah, and six-year-old Joshua. Two of the Castles’ children have been diagnosed with ADHD and Ehlers-Danlos Syndrome, a connective tissue disorder. One child has Central Auditory Processing Disorder, while another has Sensory Integration Disorder.

Because of Joshua’s ADHD, he only began sleeping through the night at age six. One of his sisters suffered from a severe anxiety disorder known as selective mutism for the first five years of her life. If not for Traci’s tenacity, all three children might still be misdiagnosed—and misunderstood. Yet such persistence has a price.

“You can’t put all the burden of your child’s disability on your marriage,” says Traci. “That’s why mentoring is so valuable. Both Jed and I appreciate talking with someone who can say ‘I know, I understand, and I care.’”

Help for Parents
When parents are supported, children benefit exponentially. (See ParentToParent.org for the results of a national study on the benefits of parent-to-parent support systems.) Caregivers who need mentors can fill out a confidential application online at OklahomaFamilyNetwork.org or receive an application by calling 271-2131, extension 47135. Mentor matches are always free of charge.

There are other free, quality programs available for families caring for children with special needs. Hannah and Joshua Castles enjoy hippotherapy, which uses horseback riding to enhance neurological functioning and sensory processing. Because most hippotherapy programs are volunteer-driven, there is a waiting list. For details, contact The Sky’s the Limit Ranch at 317-1639.

Joshua benefited from enrollment in SoonerStart, a program that assists children, ages birth to three, who have significant developmental delays or disabilities. SoonerStart personnel provide individualized interventions in the child’s natural environment. For more information, call 271-6302.

The Castles most often tap into a program right in their own backyard. As Traci puts it, “Jed and I believe all kids learn best from other kids and their natural experiences—even if those play-dates have to be orchestrated by the parents. Our kids play every day with neighborhood friends who accept them for who they are and are very supportive of our family.”

Now that’s a piece of practical wisdom that every parent should take to heart. And could it be that Traci is subconsciously training young mentors in the process?

Learn More
To learn about other free services for children with special needs, contact OASIS (The Oklahoma Areawide Services Information System) at Oasis.ouhsc.edu or 800-426-2747). Programs include:

• TEFRA. Under TEFRA, Medicaid benefits are available to children with physical or mental disabilities who do not qualify for Social Security Income because of their caregiver’s income. This makes home-based care an option for children who might otherwise require institutionalization.
• Respite Vouchers. If you care for someone with a developmental disability and your annual income is less than $60,000, you may be eligible for respite vouchers. Such vouchers allow you to set an hourly rate for the hiring of a caregiver of your choice. (Vouchers are awarded based on availability of state funds.)
• Local and National Databases. OASIS maintains an online resource directory on topics ranging from autism to well baby/child care and everything in between. Keep in mind that programs may have long waiting lists, so parents should start early to apply for services for their children.

Lori Williams is a freelance writer who specializes in writing about international adoption and the special needs child. Lori resides in Bethany with her husband Dean and daughter Aurelia.