by Eutychus
Autism, a disorder which seems to affect the sensory experience of children and adults, is still fairly rare. According to a recent Newsweek article, although reported cases are on the rise, only 1 in every 500 children are affected. The chances of having two autistic children are even less.
My wife and I should have hit Las Vegas four years ago. We beat the odds.
Sean is 9 years old and to look at him, you wouldn’t assume that there is anything wrong with him. And in fact, Sean is what is referred to as "high-functioning autistic." He can interact, communicate, socialize, play games. But his sensory system is either overloaded or understimulated most of the time. Throughout the day, you will see him engaged in self-stimulating activity; usually taking an old shoelace and shaking it in his hands. He is also extremely obsessive. As a toddler, he would always take his toys and line them up in order. Classic autistic behavior, I am told. Even as an older child the only way he would allow us to leave the house as a family was to line us all up in single file. Like his toys.
Where autism hits Sean most, though, is in his emotions. He is liable to fall into a violent rage about the most trivial of matters. Violent enough that there are times that he has to be physically restrained by two people. Sean has been institutionalized twice because of his inability to control his outbursts. The second time he went, we feared that he would never be able to come home; that he would be faced with a childhood of group care or foster homes. You can tell from his smile and the way his emotions work that he wants so bad to break out of the way his mind is forced to work and his particular chemistry just won’t let him. It breaks your heart to watch him struggle and kills you a bit inside when you realize that there are some things as parents that you are just not able to do for him.
He’s fairly stable right now. He has a regular staff of workers who come in to help manage him every day after school, although we wonder how much longer the state of Rhode Island will continue to support this. The cost is prohibitive to us; it’s nothing that we would ever be able to afford on our own. And, medicinally, the Prozac and Depakote that he’s on now seem to balance out his temperament well enough. It’s another big question if that will last as he gets older. We’re absolutely terrified about trying him on anything else. The last time he was in Butler (his psychiatric hospital) they decided to try him on a new medication : olanzapine, commonly known as Zyprexa.
The next morning, the nurses had problems getting him awake. He was very sluggish and running a temperature of 102. Wisely, they decided to call an ambulance to take him to Hasbro Children’s Hospital to stabilize him. I was called out of work, presumably just to sign some papers so they could treat him in the ER. However when the ambulance pulled up and they slid him out, he was hooked up to IVs with an oxygen mask on his face. Apparently he had had an adverse reaction to the medication. On the way to the hospital, his temperature had crashed from 102 all the way down to 92 degrees.
By all rights he should have been dead.
If Sean represents one end of the autistic spectrum, Liam represents the diametric opposite. Liam is what most would call "classically" autistic. He is about to turn four years old and, although he vocalizes, has yet to utter a single intelligible word. The only way he has of communicating, or telling you what he wants is to physically take your hand and lead you to whatever he wants. Sometimes it works, sometimes it doesn’t. If he takes you to a pantry full of food, it can be difficult sorting out exactly what he wants in the cupboards. If you give him what he doesn’t want, he’s liable to show his displeasure by throwing it across the room.
This all may sound like I’m complaining, but I’m not. I love my kids and wouldn’t give them up for anything. But frankly, when you decide to settle down and raise a family, this is not exactly what many people have in mind. It certainly wasn’t what Robin and I were foreseeing 12 years ago. You want your children to grow up normally; to have rich, fulfilling lives; to grow up healthy and become doctors, lawyers, Indian chiefs. You don’t expect them to need minute-by-minute supervision, with every mood change and each minute of their lives logged in big green notebooks. Especially in Liam’s case, who may end up needing constant supervision; who it sometimes seems may never break out of his internal world.
Who, the professionals say, may never even know what it is to love.
To all those who are fathers, or who hope to become fathers in the future, I give this warning. It’s not an easy road. But you walk the road you’re given and for your children’s sake you walk it all the way to the end. Sometimes you run it with joy and sometimes walk it in tears.
But you walk.