It may seem like Chris is getting all the exercise over here, but let me tell ya, I’ve been exercising! – Exercising some serious restraint.
When Chris took on the Long Haul 100, I wanted to meet up with him along the trail, ready with warm, dry clothes, ready with nutritious foods, ready to tend to injuries, ready with fresh batteries for his headlamp. I wanted to tell him that we’d all be perfectly happy to take him home after five hours of running or ten and that he really didn’t have to put in fifteen or twenty or twenty-four hours. I wanted at times to insist that he listen to his body and be more gentle on it because it’s the only body he’ll ever get, and we need him. But I exercised restraint. I trusted that he planned carefully and was thoroughly prepared. I honored his ambition. I recognized that he needed to find out for himself how far he could go. And he needed me to believe in him.
Most of us spend a lot of time telling ourselves that we don’t care about what others think of us.
We try to focus on cultivating our own personal bests. And yet, I have to admit – In my own little family, what each of us believes is possible, what each of us believes about each others’ competence matters a whole awful lot to each of us.
What Chris and I want for each other and what we both want for Theo is the sense that our lives are full, satisfying, even exhilarating.
So it’s only natural that we would attend to each others’ interests and listen for each others dreams. If I know the point you hope to reach, my temptation is to run ahead and clear a smooth path. I may expect to then sit back and anticipate your sense that your life is rich and satisfying. However, when the obstacles are few and don’t require that we stretch far beyond our comfort zones, you learn that you can rest assured that you will reach your goals regardless of the effort you invest or the degree of risk you take. There is no element of surprise. The dream loses its potency. You may find that the life you’re living is safe and adequate overall, but it’s hardly ever exhilarating and rarely leaves you feeling proud.
I’m reminded of Benazir Bhutto’s wisdom in acknowledging that “A ship in port is safe, but that is not what ships are built for.”
So, we make a choice…a scary choice. We choose to open the door to the great beyond. Opening our lives to risk is not the same as being careless. We seek to open ourselves to risk while also diligently planning for success.
Sometimes we have good reasons to be fearful of some risks. As parents of a child with a disability, we are acutely aware of the reality that people with disabilities are at significantly greater risk than most of experiencing abuse, neglect, and bullying. Kids with autism are more likely than their peers to wander away from the safe company of chaperones, and less likely to ask for and obtain the help they may need. (Avonte Oquendo has been heavy on my heart lately.)
Many kids with disabilities like our son’s are more likely than their peers to be injured during the course of a typical day. Over the course of his lifetime, we know that our son is more likely than his typically developing peers to experience isolation, depression, poverty, inadequate access to transportation and meaningful employment at a fair wage. I’ve been tracking the findings of the National Organization for Disabilities’ Harris Survey since our son was a toddler. Those quality of life indicators have become so familiar to me that I’ve been prepared to recite them at every one of the IEP meeting tables we’ve gathered around for the last decade.
If we know that certain risks are higher for our child than they are for the majority of his peers, then how can we protect against those risks while also preparing him for a life that’s satisfying, even exhilarating?
Well, I reserve the right to change my mind as I learn and grow, but so far my answer is this:
Rather than assigning him goals based on what other kids want for themselves (or other tweens, or other boys, or other kids with similar disabilities), we can listen long enough and closely enough to him that he learns to believe that what he wants for himself matters.
Chris and I can do that by being a stable presence in his everyday life. We show him that we’re here for him consistently, and we refrain from stepping in to clear his path until he asks or until the risks are simply too high. Rather than unintentionally teaching him to avoid difficulty and to trust only others’ judgement about what he’s capable of, I think we can condition our son to face difficulty with a butterflies in his stomach and hope in his heart. And we can lead by example on that front. (And for a little anecdotal evidence that it’s working, there’s this: Just last week on our ride home from school, Theo said to me “I stood up and participated for the whole gym class today! My legs hurts, but I still did it…just like Daddy.“)
We can show him the reality that we all need help, and we’re all capable of helping each other. We can be humble enough to reveal our own vulnerabilities to him. We can show him that dreams are often worth the risks. We can allow him to feel his own feelings and allow him to see that we’ve all got ‘em.
We can teach him to evaluate his strategies and help him to plot out a new, more finely tuned course to his dream. As a parent, I’ve learned to identify the professionals and friends who are willing to imagine with us and can coach us on this front. And there have been some great ones!
I figure I’m a work in progress. I expect that it’ll continue to feel like exercise, but
I’m going to do my best, to allow the people I love to push through their own boundaries. And that goes for all of them -regardless of diagnoses.
Rachel S.H. Valenti