I lost my voice.

by Karen Warfle

No, I didn’t have a cold or laryngitis. I didn’t suffer a traumatic accident. I lost my ability to speak up for myself. After 20 years of advocating for my son, I found I didn’t know how to advocate for me.

When my son graduated from homeschool and my daughter graduated from college – in the same weekend – I was ready to be a “retired” homeschool mom. I imagined having all the freedom any retired person or empty-nest mom would have. The reality, though, is that I’m not an empty-nester. For a time after college, my daughter moved back home, which helped in the transition of “letting go” of her when she moved into her own apartment. And my son, who has Cerebral Palsy, Apraxia of Speech, and cognitive impairment, is still and always will be a dependent. Yes, one day we hope he can move out and, with the right supports in place, live among friends. But I was ready to do or be something else NOW. I just didn’t know how.

As an exceptional parent, I’m guessing you might be feeling this scenario is, was, or will be familiar to you. So how do those of us who are wonderful advocates for our children become healthy advocated for ourselves? And why?

If you wait until your child turns 20, you might experience caregiver fatigue (like I do) or you might lose yourself in that role. But even if you are already on the same page as I am, we can change our story from this point forward.

Consider, explore, try or implement these suggestions, ALL of which require that one precious commodity: Time. That’s the very thing I find hardest to advocate for me.

  1. Tell someone where you’re at. Not just anyone and/or all your friends; tell someone who can help. In my case, it was my pastor. He identified the caregiver fatigue I didn’t even realize I had, until he put a name to it. Then I met with an outside professional counselor. Find someone you trust who can help you figure out what needs the most attention first in helping you regain that voice.
  2. Begin implementing the strategies and behavior changes that you develop with your trusted advisor. Warning: getting healthy is sometimes painful. Consider exercise; or physical therapy; or quitting smoking. All of these bring you closer to good health, but sometimes they are uncomfortable.
  3. Read. Learn about the things you are discovering about yourself. Read books, blog articles, wellness magazines and Exceptional Parent Magazine. Read also to renew your soul and develop your spiritual side.
  4. Find your “tribe,” your community. Maybe it is other exceptional parents. Maybe not. Perhaps it’s a church community, a writers’ group, a community chorus, a bowling league. Who knows? But your community is comprised of people who are not all the same but have similar interests. They are safe; they support each other with their words, actions and time. You enjoy being with them.

That inner voice you hear along the way? Listen to it. Turn up the volume. Ask others to listen to it and help you understand it. Find ways to develop it. Augment it with learning. Practice using it with safe people. Before you know it, you will find your voice again. You will be able to advocate for yourself. And you will have a renewed sense of hope for your OWN future.

Karen Warfle is a free-lance writer, speaker and parent with fifteen years of experience using Augmentative and Alternative Communication with her son. Karen has presented at the American Speech-Language-Hearing Association’s (ASHA) annual convention, Ithaca College and Davis College. She has also been published in lifestyle and homeschooling magazines. Karen is available to speak to groups, conduct workshops, and collaborate with parents, professionals, and community organizations. https://karenwarfle.com