Don’t Let the Moments Slip Away

By Janet Shouse

Two things happened last week that have given me pause to stop and think. I want to take a moment to share what’s on my heart. The first was the tragic Chattanooga bus accident that claimed the lives of six children. evan-at-steepechase-2The second was a vehicle accident that claimed the life of the young son of friends of mine.

If you are the parent of a son or daughter with a disability, I would encourage you to take a few moments to hug your child, if he or she is willing and is nearby, and to be thankful.

For several years, my son was not inclined to be hugged at all. He’s now come around to where I can get an occasional “drive-by” hug and even give him a kiss on his cheek. And I’m happy to be able to do that again.

I think we, particularly as parents of children with disabilities, sometimes get caught up in the day-to-day details and lose focus on the big picture. We may be so busy dealing with the school, trying to get appropriate services, or with insurance, trying to get a treatment covered, or with a service provider, making sure adequate staff is available, that sometimes it is all too easy to lose sight of the warm and wonderful human being we’re fighting for. It can sometimes seem to be all about the advocacy.

Then, at other times, we may be dealing with our son or daughter directly. For some, it may be constant physical ailments, such as seizures or feeding tubes; for others, it may be behavior issues, such as a daily battle of wills or even physical aggression. And some may feel that nagging anxiety to make every minute of every day a “teachable” moment, striving to stuff all kinds of learning into their child before that “window of opportunity” closes, and their child reaches a point where they are unable to learn and grow. (Just a hint—that window rarely closes completely.) But all of these things can cloud our ability to be thankful in each moment for our child and recognize daily how dear they are to us.

About the Author

janetblog[1]

Janet Shouse is a parent of a young adult with autism, and she is passionate about inclusion, employment of people with disabilities, medical issues related to developmental disabilities, supports and services, public policy, legislative initiatives, advocacy, and the intersection of faith and disability. She wears many hats at the Vanderbilt Kennedy Center, including one as a disability employment specialist for TennesseeWorks.

Our hope is that this weekly blog will offer information you want to know, so if you have a question you want answered about employment for people with disabilities or other mysteries of the world of work, please email me at janet.shouse@vumc.org.

At other times, we may be battling with society’s perception of our son or daughter. The anxiety or frustration we feel when our child doesn’t behave appropriately in public, or on those occasions when someone belittles him or her can lead us to focus our attention outwardly rather than on our child and their needs in that moment.

Or maybe it’s just me.

I know there are days when I’m not particularly thankful, and there are days when I don’t stop to think about how much I love and value my son. Or for that matter, how much I love and value my two other children.

But last week’s events were a stark reminder that we are not guaranteed any particular amount of time with our children.

One of my colleagues, Dr. Erik Carter, often talks about how, in terms of employment, we need to consider the gifts, talents and strengths of individuals with disabilities. I think that focus can also help us practice gratitude for our children.

Whether your child’s gift is an infectious laugh, getting along with others, or the ability to tell you the velocity and acceleration and momentum of an oncoming car, try to learn to view your sons and daughters through the lens of their gifts and talents. In doing so, we may find it much easier to want to get that “drive-by” hug, to let them know often and genuinely how much we love them, and to take regular opportunities to say a word of thanks.

I hope you all had a wonderful, restful and gratitude-filled Thanksgiving.

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