To the Dads

When referring to parents of children with autism, we typically are referring to the moms and how it is they manage to orchestrate family life, amidst the unpredictability of autism. But this is a salute to the dads, who are equally bewildered and stunned on first receiving their child's diagnosis. Like the moms, they have to figure out how to navigate this new world they didn't expect to be in. Their challenges in dealing with this information are different than the mothers, by the very nature of the differences between men and women. Some are paralyzed and don't know which way to move, and others immediately seek solutions and google interventions and research. As their children develop, it is remarkable to see how these fathers come to terms with their child's disability.

It has been my observation over the years to see a change in fathers. Thirty years ago, the child rearing was still very much the purview of the mother; managing the school schedule, the dietary requirements, doctors' visits, etc. And, what seemed to me, a reluctance or perhaps a lack of understanding on the part of the dads to accept the disability for its apparent limitations. But that appears very differently now in the dads I meet. While it certainly can't be an easy life, there is much more humor and acceptance of the personalities and peculiarities of the children. I don't know if its just my imagination, but it seems that dads have in some way been granted permission to enjoy their children more and the situations they find themselves in. I suppose that's the only good thing to come from the increase in the incidence of autism - more people are aware of it, recognize it, and are slightly less likely to be quite so judgemental - that is still ever present.

So, here's to the dads - to Jim, who enjoys joking with son Jeffrey and have worked out some funny little routines; to Sean, who laughingly came to school to collect the computer son Jack took to school while he got Jack's backpack; to the group of moms and dads who took their kids to family camp this weekend; to David, a single dad who revels in the accomplishments of his son Jonathan in the music group, the "Magic Makers"; to Joe, another single dad whose daughter Krysten is moving on to a new adult program; to Jim, father to Matthew and Jonny, whose adoration for his kids is palpable; to Christopher, who takes his Jonny everywhere and delights in his compatability. Okay, the list is too long. To all the dads, who may be baffled and harried, but who fight and advocate for the best their child can have. They may not show it obviously, but it is clear these children love their dads and I'm sure they know well their dads love them.

The Death of a Loved One

Joey's dad died a few weeks ago. He was 92. Joey's mom had died several years ago, leaving Joe Sr. to look after Joey. The youngest of five children, Joey had lived with his parents all his life. His older brother moved in with Joey and his increasingly frail dad to help out over a year ago. The family had never intended Joey to be placed in a group home, despite the fact that Joey is not always the easiest person to care for. Even though Joey was (and still is) constantly taking and stuffing things into his pockets - papers, old napkins, tennis balls etc.; compulsive about many activities and determined to do things his own way; and even occasionally would lock his parents in their bedroom, his parents nonetheless delighted in him.

Joey has a nice singing voice and loves to harmonize. He enjoys all kinds of music, from opera to rock and roll, and sings the melodies lustily, without knowing any specific words. A while ago our talented IT staff and one man orchestra, Jim, brought his guitar and Joey down to my office. Jim wanted me to hear Joey sing the Elvis song "Are You Lonesome Tonight?" Knowing this would be a treat, I recorded it on my iphone, downloaded it on my computer, and occasionally will listen to it just for the joy and simplicity of Joey's singing. He has the rhythm perfectly down, the melody exact, the inflection and approximation of words, and the pathos spot on. Where Elvis would embellish the music by speaking, Joey again approximates the sounds, pausing precisely as Elvis would. One would assume Joey wouldn't know of what he is singing. But how can he get it so right? Joey certainly understands something of the song's context and is very able to translate that to the listener.

Joey's parents were very proud of his musical talents. They loved to hear Joey sing and made sure he had access to many different styles of music. They laughed and cherished his many peculiar and compulsive behaviors, though many surely must have compromised their lives. Joey must wonder, where are they now, these two people who loved him so deeply? While he seems to be adjusting well - his brother makes sure his lunches are the same, his longtime caretaker, Hector is still involved, and home life is the usual routine, we want to watch carefully to help Joey for those inevitable times he will realize something is missing in his life. Everyone experiences grief differently, and people with autism are no exception. It may manifest itself in some unusual way, but I believe it is in their hearts somewhere. Maybe Joey will connect with his parents through his songs. I'd like to think that when he sings, they would be listening.