When I’m Gone….

How will your vulnerable child’s life unfold when you are gone? Every parent has thought about it, with varying degrees of angst. Plumes of brightness and darkness fill our heads—swirls of possibilities and concerns. You will no longer have any control over your son or daughter with a disability. And that can be a worry.

In their younger years, protection of all children initially focuses on safety and security issues. Protection’s many faces evolve over time, as the child develops. By adulthood, most citizens assume responsibility for the fullness of self-protection. Regardless of age, ability or cognitive functioning nurturing those skills to the best of one’s ability is key for every human.

I’ve always accepted that parental protection alone wouldn’t safeguard my vulnerable son. Matt needs others to help protect, while strengthening his personal awareness and control. Every tidbit supports my son to thrive, not just survive. Early on, I knew that a positive vision, clarity of voice and staying the course was the only way forward. Independence and interdependence ruled.

As unique individuals, we navigate life differently. Yet, no matter the chosen course, every life is enhanced by meaningful relationships, valued social roles and a sense of belonging. Sadly, societal views lag and toxic, devaluing messages get spewed.

When families are overloaded and without strong allies, those messages penetrate deep into the heart. Limitations and risks get airtime, rather than capacities and imagining better. Fiercely committed, loving parents readily absorb the devaluing messages, expect little, set expectations low and take maximum responsibility for their child’s life. Everyone pays a heavy price.

Protection issues become the focus, stuck on safety and security. Parental concerns increase and risks are real. These aren’t weak people. It’s the societal safety net that is weak. Left alone, without adequate supports, isolated parents struggle, while making valiant efforts. Over time they find themselves exhausted and stranded on a precipice. Fear mounts, a fall is inevitable and there’s no safety net…for anyone.

Ultimately, parents don’t worry about themselves—it’s always what will happen to their vulnerable loved one. Prospects quickly turn bleak. When the final strand lets go worse nightmares can kick in. To avoid this tragedy, I highly recommend that families dream big, plan early (or now), gather allies, reach out and regroup often. And yes, safety nets are lifesavers.

The safety net for my son looks decidedly different from my daughter’s, yet the webbing is the same. It needs maintenance and sometimes repairs, as does mine. My passion has been fueled by unconditional love and pursuing possibilities. Matt’s now well on his way to creating an everyday life of belonging. Zigs, zags and detours may still arise, but prospects are bright. And that brings me peace.

Susan Dunnigan

June 2022