The Teachings of Jon

According to my wife, we’ve had access to the film, “The Teachings of Jon” for quite some time. However, I saw it for the first time just a few days ago. The film didn’t change my advocacy philosophy as much as it simply resonated with me, articulating and validating much of how I feel about inclusion and societal expectation related to people with developmental disabilities.

The film, shot documentary style, tells the story of a couple that welcomed their son Jon, who has Down syndrome, back into their family at an early age.  He had spent the proceeding years in the care of another individual, but when the caretaker passed away, the family picked Jon up, drove him home and began their life together.

There is much in common between my son and Jon. Both have dramatically limited speech skills and they both share an affinity, or perhaps compulsion, for ritual and obsessive behaviors. Yet, both have loving hearts, an unassuming disposition and an acute ability to sense the emotions of others and respond compassionately.

I was especially impressed with Jon’s parents and their ability to “say it like it is,” without coming across as fatalistic, self-indulgent or victimized. Rather, they’re honest and realistic, and their perspective has the potential to redefine how society embraces people like My Keiki and Jon.

Read the following from Jon’s parents on the film’s website:

We learned early on that it took a lot of struggle and effort to try to make Jon be just like us. So rather than trying to change Jon and make him fit into our idea of what we think is important, we focussed on how to grow and adapt to Jon.

A perfect example is with Jon's wardrobe. Jon is most comfortable in his t-shirt and underwear. For years, we tried to make Jon wear pants all day. It took a lot of effort and we had to tell him over and over again "No Jon, you have to keep your pants on". He didn't understand why. We finally realized that is was more important to us for him to be comfortable in his own home, than for him to dress the way we wanted him to. So we adapted. Now he understands that when he goes to work, or out in public that he has to wear his pants, and when he comes home he can wear whatever he wants to wear.

We try our best to teach our son social norms. However, sometimes our words just don’t resonate. Sometimes, my son won’t keep his pants on.

So often, I read about the importance of helping people with developmental disabilities overcome behaviors that are a barrier to socialization. But sometimes the behavior isn’t the barrier. Rather, it’s how the rest of us respond to it.