There is no greater gift than my son, Luke. This seems trite, I know; what decent parent doesn’t say that about their child? Yet and still, Luke is very special. God gave him to my wife, Sue and I because he had faith in us to protect and nurture one of his greatest treasures. Not sure why, but who am I to quibble with the almighty.
A tall and strikingly handsome 18 year old, Luke is as close to a sinless human being as you will find. He has no malice in his make up, no personal agendas that include lessening somebody else, and telling a lie is close to impossible for him. Now, he will fib for an advantage in scrabble or some other board game, but dishonesty in the service of intrigue is fully alien to him.
Luke falls into what they call the autism spectrum, but his primary deficit is his inability to innately grasp time. What does this mean? If I asked you when you first understood time; you would shrug and have no answer. Like talking, it was simply a concept you grasped from earliest memory, like breathing or taking a leak. Tuesday has always followed Monday, July has always come after June, and you have effortlessly structured your very existence around that understanding. If I came up to you, snapped my fingers, and suddenly that instinctual grasp of this universal continuum was gone, I can assure you things would get very confusing.
Back in the day my friends and I were given to … er, experimenting with certain substances. Once, down in Ocean City, in the wee hours of a long night, a fellow traveler was having a rough go of it. I asked what was wrong; he looked at me in abject terror and declared… “I’m f**cking freaking out! I forget how to tell time!” Welcome to Luke’s world.
Everything Luke does from dawn to dark aims to cope with this deficit. The world he sees is fully fragmented, like a 10,000 piece puzzle. He gets a bit of order here, a bit there, an idea that makes sense here, a piece that doesn’t fit at all there… often never enough, but sometimes way too much. And whatever he hears from us in the way of help is always unclear because he simply can’t tell us what he needs. It is a life lived by relentless trial and error, with no effective way to discuss the outcomes. A science project without an agreed on conclusion, just vague theories…over and over.
In an ironic way Luke lives as so many life coaches preach – always in the moment. This is perhaps the most painful and frustrating part of loving him; he cannot take the life he just experienced into the next frame. We can spend an hour surfing in ideal conditions, me pushing him into wave after wave that he rides all the way to shore, followed by the indisputable progress of him deftly paddling back out to the line up. During this time he will laugh, and even high five. He will accept my accolades and enthusiastically jump on the next wave. But the minute I see him reach down to undo his leash and walk the board back to our spot on the beach I know it’s over. By the time I get to him the whole thing is miles in the rear view.
“That was great buddy; I’m so proud of you. You caught some fantastic waves. Wasn’t that fun?”
…..
“Hello?”
“Yes, it was good. Dad, I just want to go to the jetty now.”
Life in an endless series of clips, each framed and inaccessible once completed. The hell of it. Of course Sue and I have adapted to this, and take whatever we can get; she won’t allow it get in the way, and lives life dedicated to being her son’s best friend. It may not ever be enough, but it will have to do. Wonderful mothers don’t complain, they adapt…and love with all their heart.
Luke’s big sister, Issie, the only other person in this world he can fully count on… we hope… because someday she will be all he has, has also bent to his limitations, but sometimes still gets frustrated that what just happened stops cold. Yet and still, he is the best sibling one could have, always there, and unconditional in everything toward his sister. There is no greater love.
Luke has forced us all to take it a day at a time. Yet, that doesn’t stop me from lying in bed at 3AM wide awake, ever worse since my aging prostate has expanded and requires two-three trips to the bathroom each night, and contemplating his future once his folks are in the ground. The world is unforgiving and will surely have him by the short hairs when I am gone. My daughter is only 20 and should not have such a burden when her peers are only indulging their own paths.
Whatever plans we formulate can never be enough, and the idea of my son institutionalized and mistreated is what turns insomnia to a panic attack. And just know, because this is really the point of this post, there are thousands upon thousands of parents sharing my life, my exact concerns. Whatever the numbers – 1 in 100, 1 in 85, doesn’t matter – a wave is coming, and my beloved son is part of it. They will surely suffer without community patience and understanding. They can’t ask for it. They shouldn’t have to. BC
A beautiful, eloquent description of a world most of us cannot fathom. You and Sue are heroes parenting both of your children .