What do you do?

Children with autism and the amazing parents that look after them.

When men greet for the first time socially they ask the same question, always, “What do you do?” It is the method we use to put each other in a category. It is how we measure the rungs on the ladder of success.

We are fortunate to be friends with a great couple Jon and Juliette, she is a lawyer and he stays home raising the kids. It wasn’t always this way. Jon has his master’s degree in a very technical field. Their world changed when their son Ben came along. Ben has autism and they had to choose which one of them was going to surrender their career while the other was tasked with financially supporting the family. I imagine the two choices, regardless of the outcome, would have been hard either way for each of them. When Jon agreed to stay home with Ben he knew he could not return to his career because it changes quickly and he would fall too far behind to catch up again. Juliette has the weight of being the only income for the family and when she is not at work she must provide Jon with a recess from watching Ben.

Benjamin is this beautiful boy with a big pirate’s smile, locks of wavy hair and a wonderful disposition. He runs on high octane fuel and his foot is heavy on the gas pedal most of the time. I marvel at the energy Jon and Juliette have keeping up with him. We had them over on a warm summer’s night and sat on the patio and enjoying a glass of wine and catching up. We gave Ben the garden hose with the water turned on slightly. While his parents never relaxed worrying he might step on a flower or break something, my wife and I marveled at his ability to water the entire yard with stream of water that was the size of a pencil. It was not missed by us that mom and dad very seldom have the opportunity to put their own lives into neutral and just relax. My wife and I have commented on more than one occasion how lucky this boy is and how he won the lottery, when these two people became his parents.

Several months ago I attended a social gathering of just men, the majority of which are very accomplished. Many are wealthy. I watched from across the room as someone approached Jon and asked the question we men always ask. “What do you do?” Before I continue I want to tell you another story.

The Utah Legislature was recently in session and I was on Capitol Hill when I bumped into Jon. There was important legislation regarding insurance for autistic children that had stalled in the legislative process and it was immediately obvious why he was there. Months earlier Jon had decided to carry the torch for these children and had been guiding some of the autism bills through the system.

We stood outside the doors to the morning session with another hundred people that had sent a note inside asking for a moment to discuss an issue. The lawmaker will come through the doors and call your name and in 90 seconds you state your purpose for the note without taking a breath. This environment is crazy and after a few hours I have had more than my fill of it. “I have been here every day of the session while Ben is in school” Jon said “and I plan to be here the rest of them.” The Utah Legislature is in session for 42 days and I thought to myself there is no way I could do that. But then again I couldn’t last with his son Ben for more than an hour without sleeping it off for a day.

The next day I had an afternoon meeting at the capitol, and I was reminded how the throngs of people are always gone in the afternoon and it was somewhat quiet compared to the morning sessions of madness. The Capitol Rotunda is an expansive space and you can see from one end to the other. I looked across the building to the far side at the doors to the House of Representatives and remembered the chaos from the day before. There was only one person in a shirt and tie standing at the doors. Only one person that is still manning his post, still hoping that someone will come through those doors and listen to him tell his son’s story, to ask them to make every effort to help him on his difficult path. It was Jon. It was a father protecting his son. I arrived at my meeting with tears still welled up in my eyes.

I have witnessed Jon answer that question “what do you do?” and the puzzled look that follows. “I am a stay-at-home dad taking care of my autistic son” he says.