Honoring parents of children with disabilities

This weekend, Americans will be celebrating Father’s Day, an honored tradition made official by President Richard Nixon in 1972.

It is a day of celebrating the contribution of dads everywhere to the development of our children.

I want to put a spotlight on another group of parents. In my work, I get to meet a variety of parents of children (and adults) with disabilities. These parents never cease to amaze me.

Parents of children with disabilities have challenges that most parents don’t have. The decisions to be made are enormous – decisions about medical treatments, decisions about specialized services, decisions about adaptive equipment, decisions about educational choices and all the other decisions that are typical to raising a child.

Often, children with disabilities also need round-the-clock care long after a typically developing child would need, so parents struggle to find time for a break. If the child has complicated treatments or is fragile medically, they may also find it difficult to find someone to provide respite care.

As children with disabilities become adults, parents face more decisions about when and how to support that adult becoming independent. Services for adults with developmental disabilities are difficult to access because of long waiting lists for state-funded services. It is estimated that a person with a developmental disability who goes on a list for residential services may have to wait 15 years or more before being able to access those services.

With all the challenges, though, parents of children with disabilities become incredibly resourceful. I see parents with very young children learning early about how to become strong advocates for their child’s needs. Parents have initiated practically every positive change in the educational and social-service systems that serve people with disabilities. Both as individuals and banding together, parents of children with disabilities have challenged the status quo, implemented legislation and designed programs that support the individual needs of their children. Often the battle is hard but worth winning.

Yet these battles are not without their toll. Research on parents of children with disabilities shows that the cumulative stress of the extra tasks during daily routines has an effect on the physical and mental health of the caregivers. There can also be an additional financial burden. Parents of children with disabilities are more likely to experience major life events such as divorce, illness and surgeries and frequent moves.

Good self-care is important for these parents, as is access to peer support, respite care and financial resources. The Family Support Program at Community Connections is one place to access support. There is a short waiting list for financial support, after state funding was cut over 60 percent, but the access to resources and referrals is ongoing.

If you or someone you know is a parent of a child or adult with a disability and you are looking to get connected, call 259-2464. Community Connections serves all five counties of Southwest Colorado: Archuleta, Dolores, La Plata, Montezuma and San Juan.

Tara Kiene is the director of case management with Community Connections Inc.