7/26/2011

Mark Osteen's One of Us

There are many memoirs out there, many stories by individuals about their journeys as parents of disabled children, and some are good, some are great, and others are neither. Some writers are polished and offer their journeys with a luminosity of prose that leaves your soul fed. Other memoirs, while polished and offering a distinct voice, a unique insight, leave you with a heavy heart, a soul weighed down by the limbo, the purgatory, the family finds itself in. Osteen's tale, One of Us, does that: leaves the reader weighted and yet lost.

Mark Osteen's memoir of raising a severely impaired son on the spectrum and the decision to place him at a residential school is not an easy read. It's well-written, it's detailed (perhaps too detailed with its descriptions along the way of people he and his wife had issues with), and it's brutally honest. It is not a book for parents new to the journey; it just isn't. It's a book for those willing to bear witness, ready to hear the reality of what autism is for some families, for whom happy endings are not in sight, whose burdens, whose choices, are grim ones.

Last month, my kids and I watched Fly Away. My son commented on the film, a film with an autistic young woman with similar issues as Mark's son, about the lucky kind of autism:


Lily asks over and over why Mandy is so aggressive and to listen to Bobby explain is illuminating; Bobby says to Lily, “She doesn’t have the lucky kind of autism.” And I feel my nose tingle and tears start. What do you say to that?

Mark Osteen's son doesn't have the lucky kind of autism. This family's journey isn't one of uplifting, of overcoming, but is instead a clear, level look at autism that severely impairs a person, causing the family to make decisions that don't have happy endings, but pockets of limbo, where a couple is left in an empty house, finding ways to make it through those times their son is living at his residential school. It is an empty nest far too empty far too soon.

This isn't a book that should be offered blithely to all, but instead one that should be carefully proferred to those willing to bear witness, to join an uncertain and painful journey. It will resonate with families going through similar ordeals and perhaps offer them comfort that these decisions can be made, that life can go on, that it is not the worst thing or even the wrong thing to do, that no one in the middle of such decisions is a failure for recognizing that placement in a residential facility is appropriate. It's one that those of us dealing with the "lucky kind of autism," the kind where significant, often phenomenal progress is made, should make time for. Sometimes all we can do is offer to bear witness, to stand and listen, to offer empathy.

Learning to make peace with life's surprises, jolts, and arrows is a continual process, and it is a process that leaves some people struggling, some people in limbo. While Osteen writes in the concluding page of his book that he sees his journal as "a tale of endurance" that becomes a tale of acceptance, it is an acceptance that comes with a price. It isn't giving up, not on his son or his son's journey, but it is giving up the traditional dreams parents have. And that, despite his closing line, "We finally accepted Cam as one of us. Then we had to stand aside and let him take his rightful place as one of you," invokes in me, at least, a lament for what could have been, should have been. It is, perhaps, because I recognize, despite our "luckier autism," one that I recognize. Letting go, standing aside, and accepting that we don't control the outcome for our children is a hard lesson to learn, and because their futures are so uncertain, it is hard not to feel that sense of limbo.

5 comments:

Life as the mother of 4 said...

Wow, Bobby nailed it! I say that all the time. Will is a really easy severely autistic kid.

melbo said...

Bobby is wise beyond his years. Lovely post.

farmwifetwo said...

Requested that the library purchase it.

sharon said...

Wow, I wrote my post earlier today, then read this. I'm not ready to read this book yet. But I will someday.

K- floortime lite mama said...

what an amazing post
you made me tear up