Raising the Bar, for the Sake of Our Children

Face it: we parents with children with disabilities (my wife, Gina, and I have three) can be the worst when it comes to holding high enough expectations for our sons and daughters. Because of our desire to shield our loved ones from emotional pain, physical harm, or personal failure, we make choices which are sometimes not in the best interest of our kids – no matter what age these “kids” may be. Although we might say we want our sons and daughters to enjoy a meaningful and productive life, fully engaged in their communities, how we act can hold them back from this goal, or at the very least, send the wrong message.

“They’ll laugh at her.”

“They’ll bully him.”

“They’ll never hire her.”

“They won’t understand what he’s saying.”

“She’ll never learn how to drive.”

But, guess what? Our son Bernie who has autism did learn to drive, and he’s really, really good at it. He succeeded in spite of Gina’s long list of concerns about him being on the road, in a vehicle, eventually by himself. Now, I’m not a low-anxiety person, and I am constantly, to quote a favorite musical artist, Bruce Cockburn, “wondering where the lions are.” I can manufacture problems faster than Nabisco can spit out Oreos. But somehow I was able to get pretty Zen-like, and allow Bernie to take the wheel, and calmly (for the most part) teach him how to do all those things that people have to do safely to get their license. He’s careful, keeps to the speed limit (25 in our neighborhood), and is adamantly against using his cell phone when driving.

We still sweat over what might happen if Bernie is pulled over and has an altercation with a police officer, because of our son’s social and emotional challenges, and huge justice buttons – if Bernie believes he’s right, there’s no talking him out of it. But thankfully, that hasn’t happened yet.

Lynne Seagle, a dear friend and the executive director of Hope House in Virginia, talks about risk. Life is inherently risky. Every time we leave the house we open ourselves up to those “lions” lurking everywhere. But, is the alternative to stay home all the time? Heck, just staying at home means we could die in a fire, or become a victim of a home invasion! Lynne says that’s why agencies and families and individuals have insurance, for those instances when something bad happens, and someone is injured or property is damaged, or…you name it.

Now, I’m not suggesting that we send our loved ones out to do dangerous things without any thought to safety, but there’s a balance, and parents often err too far on the side of caution. Gina likes to evoke person-centered guru, Michael Smull, when she says, “Dead and happy are incompatible, but alive and miserable is unacceptable.”

We need to listen to what other people are saying about our children – people who have higher expectations for our kids than we do. People who are one step removed, and who have a different, less-tangled perspective. They’re the ones who will allow our children to learn and grow and experience pleasant, and yes, sometimes, unpleasant things – if we let them. Look back at your own life. Did you ever experience unpleasant things? Make mistakes? Fall flat on your face? Get your heart broken? Crash your car? Overdraft your bank account or acquire too much debt? Say or do something that got you fired? Lose a friend over a stupid misunderstanding?

Why should your son or daughter miss out on those vital learning opportunities? Because he or she has a disability? But wait – didn’t we say in the first paragraph that we wanted our children to enjoy a meaningful and productive life, fully engaged in their communities? To quote Lynne Seagle again, “we can keep hypocrisy going for so long.”

And to quote the Tennessee Lottery, “you cannot win if you do not play.” How are we going to know what our children will enjoy, or succeed at, if we don’t let them “play”?

Several years ago, I had one of those huge light-bulb moments. I was invited to give a presentation for an Annual Down Syndrome Conference in Memphis. My subject: “Learning to Speak Up and Tell Your Story.” My audience: 25 young adults with Down syndrome. About an hour before my session began, a mother of a daughter with Down syndrome approached me, to find out what I was presenting on. I told her the topic, and let her review my PowerPoint slides. Then she said, “Well, Denise really wants to go to this, but I don’t think she’ll get anything out of it.”

The workshop began, and I’m facing a packed room full of young, enthusiastic people with smiles, excited about learning with me. A handful I already knew from my Partners in Policymaking and Youth Leadership trainings. Denise chose to sit in the middle seat of the first row, and throughout the hour, made spot-on comments and brilliant insights into my subject matter. She was actively engaged and understood every word and concept I delivered, and got all of my jokes! She was one of the reasons this particular presentation sticks in my mind so clearly, and has become one of my top three experiences in 30 years of training. And Denise was far from alone – I was lucky to get through my content before the ending time due to so many great questions and keen observations from all the participants.

The moral of this story? Denise’s mom didn’t recognize or appreciate her daughter’s skills. She had set the bar way too low. And, if we as parents go through our lives thinking our children aren’t capable of this or that, good enough to do this, or mature enough to do that, that’s our problem. But we can’t allow our limiting thoughts to be our children’s problem, too.