Helping parents, how organizations help children with special needs

COLORADO SPRINGS — Sheila Williams and her husband Jason have six children, four of whom have special needs.

One of her oldest children, 21-year-old Jordan, has a few conditions that lead to more than a dozen other diagnoses. Among his diagnoses, he has a condition known as Lisencephaly, which means his brain is smooth.

“When we had Jordan, life changed, it meant we had to seriously change direction,” Williams said. She was serving in the Air Force and eventually retired to care for him.

She learned early on that there was help so she could care for her son and now three other children she has adopted with special needs.

“Life is real (laughs), life is fun, life is exciting, life is work, life is challenge,” Williams said.

Colorado is one of a dozen states that allow parents to work as caregivers for their children. Local organization Nursing Therapy Services of Colorado (NTSOC) helps families like Williams navigate the insurance system and lead them to become certified nurse aides (CNAs).

“As a parent, I was fragile with all the new responsibility of having a child with special needs,” Williams said.

For Jen Hanson, Case Manager and Care Coordinator at NTSOC, navigating the system is something that completely changes the course of families.

“It’s like winning the lottery,” Hanson said, “it’s life-changing.”

Hanson works as a liaison for families navigating Medicaid waivers, for children who would not normally qualify for long-term care.

“It’s about adaptation instead of rehabilitation,” Hanson said.

Generally, parents should find other child care for their children, but as a CNA, they can be paid to care for their children at home.

For Williams, it’s something that she says gave her purpose. She not only worked to help her family, but found ways to advance it.

“I was meeting other parents and sharing the other information and I was like wow, I was helping other families, and that’s where I found purpose,” Williams said, “I don’t cried more about what I walked away from, but I embraced with all my heart being a parent, a mom, an advocate.”

As she has found meaning in her life, she hopes others will understand how families with special needs navigate life.

“Although our needs are different from those of a typical family, we are a family all the same,” Williams said.

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Lance B. Holton