The Silent Son. Ken Atkins
plan was to get my degree, land a good teaching job, settle down in my small town, find a nice girl to marry, maybe have a kid or two, and spend my life surrounded by good friends. You know, just a quiet life and the simple, easy things like a cold beer and cooking steaks on the grill every Saturday.”
The half dozen guys in my recovery support group stared into their coffee cups or laps and chuckled. The plans we all made seemed so clear and doable when we were teenagers. But years of bad choices, addictions, broken promises or unforeseen tragedies had left their scars, and here we were gathering once a week to admit that our lives had become unmanageable and we were powerless to fix them.
The stories were as varied as our backgrounds, but there was a common thread. None of us ever planned for it to turn out like this, and even though we couldn’t change the past, we believed that, with God’s help and our obedience, the future didn’t have to be more of the same old, same old.
The one part of my life that set me apart from the rest, besides the fact that I was the only white dude in the group and at least twenty years older than most of the other guys, was that my adult son was sitting next to me in the meeting. Usually, our program doesn’t allow family members in the same share group, because their presence can inhibit the openness and brutal honesty that is required to come to grips with the darkest parts of our broken psyches.
But it was OK because my son has been an ever-present appendage for my life almost since he was born, and certainly for the past eighteen years. Danny is twenty-seven. That’s his chronological age. But in reality he will forever be eighteen months old. Danny has a genetic defect known as Angelman Syndrome, which manifests as severe mental retardation, and a very happy, almost always smiling, countenance. Shortly after his ninth birthday, his mother and I separated, and since that time I have been his primary caretaker and decision maker.
He has been by my side, literally, through divorces, a couple of major relocations, career changes, years of ever-deepening depression, alcoholism and now recovery. He has sat in the front seat of my truck patiently watching as I parked on the side of the road weeping uncontrollably, or lost my cool and yelled into the phone at significant others, or worked for hours in the blistering heat or freezing cold at one of the job sites where I earned my pay, or mindlessly put thousands of freeway miles on my truck taking him back and forth to spend time with his mother.
I realized a long time ago that this fact—having a handicapped child and now adult to care for—puts me in a unique and often overlooked part of society. We are admired, or pitied, or put on a pedestal, or complained about, or simply ignored, because we are different from most, and “most” don’t know how to deal with us, so they just avoid us for fear that they might do or say the wrong thing.
Those of us in recovery often joke that we are “those people”—the ones that many churches have turned their backs on and really don’t want to see or talk about, because of the bad choices we have made and the damage we have inflicted on ourselves and those around us. In short, good people avoid “those people” because “they” have problems that “good people” prefer to keep out of their lives.
It is basically the same for those in the handicapped world. I don’t think most people have a dislike for us over here, they just don’t know what to do with us. So best to just smile, nod and move on about their regular lives. Lord knows, every life has enough stress in it, handicap or no handicap.
Raising a child with special needs requires many special talents, special sacrifices and special strengths that you probably never realized you had before. But in more than a quarter century of dealing with all these challenges, what I have found is that the really “special” part of all this is the relationship you will have with the “special” child, and with all the significant others in your life—spouse, other children, dear friends, doctors, therapists, teachers and a handful of angels you will encounter along the way. And with your creator.
Danny is a strapping, healthy twenty-seven-year-old man with a mind that will be forever stuck in the pre-verbalite era. He loves people, and people love him. And though he will never speak a word, he has profoundly changed the lives of many, many people, starting with me.
This is his story—our story. And at the end perhaps you will see the many lessons I learned along the way. His story is not a tragedy, nor a heroic tale. It is the story God wrote for him, and it is pretty much the same one God writes for all of us. We just need to take a step back and try to look past our own selfish desires, fears and doubts.
This wasn’t part of my life plan when I was getting out of high school. It wasn’t part of my plan even when, at age forty, I welcomed him, my first child, into the world.
But it is what it is. And it is pretty darn amazing.
Chapter 1
THE RELUCTANT PARENT
“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not harm you, plans to give you hope and a future.”
– Jeremiah 29:11
It is a typical Sunday afternoon. My twenty-six-year-old son is on his twin bed, bent double, with feet on the floor, butt on the edge of the bed and head resting on my office chair, having spent several minutes getting perfectly placed in this very uncomfortable looking resting position. He is paying no attention to the SpongeBob rerun playing on his large screen TV. Oblivious to the world around him, he quietly rubs his thumb back and forth over his mouth, an activity that can occupy hours if left uninterrupted by me or our black cat who wanders in and out looking for someone to hit up for a quick game of swat or a back and head rub.
I am on my twin bed next to his, working the Sunday crossword, both glad for and resigned to the fact that this peace and quiet will last the entire afternoon, as long as I stay in the room with him, even though he seems to be totally unaware of my presence. Experience has taught me that if I leave the room for more than two minutes, he will be banging on the wall, demanding my return, so that he can resume his thumb-licking.
Such is the life of caring for a mentally handicapped person. It can be daunting, physically and emotionally challenging, scary, exhilarating, exhausting, even soul crushing. Mostly it can be incredibly monotonous.
But don’t get me wrong. Raising my son has been the greatest joy and blessing I have ever known. It has taught me to be more patient, less self-centered, more organized, yet less structured. Mostly, it has taught me I can do many, many things I never imagined, but only by the grace and mercy of God.
I write this book as a message of hope and understanding for those who find themselves in this position with no idea what it means. There are no classes or instruction manuals for quick reference. There are lots of ideas, stories and suggestions that you will receive from family, friends, doctors, therapists and unlimited Internet sites. Some of it might even be helpful, but none of it should be accepted without careful examination.
Three things you should know before we start:
1 1.There is no single right way for raising your handicapped child. Every disability comes with a wide range of effects and effective treatments. Not all Downs kids are the same. Or CP kids. Or, in my son’s case, AS (Angelman Syndrome) kids. Just like normal kids, special needs kids have a million subtle and not-so-subtle differences between them and their peers with the same diagnosis. One of those differences, possibly the most important one, is you. How you adjust to this new life will have a huge impact on your beloved child (or adult). Which leads us to:
2 2.You will never totally get this the way you hope. There will be mistakes, tears, fears and moments of doubt and depression. Your old life is basically over, but that’s not necessarily a bad thing. You will find yourself thinking more intentionally about what you can do to enhance your child’s life, which may include getting rid of a lot of