Reflections on being the father of a boy with autism.
The downsides of having a child with two major challenges — autism and a rare lung disease — are obvious.
But there is, ironically, one upside to this combination: C’s autism means he never notices the odd (and occasionally hurtful) stares he gets because of his nasal cannula and 25 feet of oxygen tubing. Of course, I wish he weren’t oblivious to others in most situations, but if I’m looking for a bright side, his inability to take in the stares of others is one.
It’s a question I’ve been asked by adults a few times, so I assume it’s on the minds of many more. It’s a question I genuinely appreciate, since it means the person asking it wants to interact with C.
So, here’s my answer: Continue Reading →
Last night I had a dream that I was driving rather fast on a highway. I don’t remember where I was going or why, and I was alone. The road grew dark, and it became very quiet in the car, but still I was moving. There were no other cars on the road; nothing on the sides of the road; no stars or moon above, just pure darkness outside. Continue Reading →
When we first began to notice C lining or stacking things in neat rows and piles — toys, blocks, food — we were concerned; it’s one of “the signs” parents are told to watch for, one more thing to worry over. Accompanying the ordering of objects was the eventual meltdown if they fell apart or weren’t just so. Another sign. Continue Reading →
Our twins, M and C, have been together since inception, near each other always, except for brief stints when C was hospitalized for lung disease.
They are close in many ways; they even look enough alike that people often ask if they’re identical (they’re not). But since C began retreating into his own world, they began to have parallel lives. They are usually near each other physically, yet there is a distance between them as each goes about his own activities. Continue Reading →
One of the more surprising aspects of being the parent of a child with special needs is the reaction — or lack thereof — of close friends: people I believed would be there for us have faded into the background. At the same time, other people — some new and some old — have come forward in remarkable and wondrous ways. Continue Reading →
My concern with giving C the combined MMR vaccination has nothing to do with autism — he already has it. My concern is that, given his compromised immune system, a triple-shot vaccination could trigger a bad reaction. Continue Reading →
If you’re lucky, you will have a defining moment in your life. It might not seem lucky at the time, but consider living without one.
Going on this journey with C has changed me in profound ways, and we’re only just beginning. Nonetheless, I’m trying to allow the changes to help me grow, learn, and find new meaning in my life, a redefined purpose. I’m not grateful for what he’s facing, but I’m finding some solace in the positive changes I see happening in myself.
“Hug, Daddy.”
C stopped saying things like “hello” and “goodbye” months ago. Gone were “Mommy” and “Daddy.” No more running to get a squeeze. In fact, he stopped asking for almost anything. He just went away. Continue Reading →
About two years ago, shortly after C was put on oxygen, we went on a family picnic. Once situated, C began to toddle around, exploring the area, when his oxygen tube got tangled in the backpack. I was struggling to untangle the mess when C reached the end of his tether and was yanked backward. In a moment of frustration, I threw the tube down on the ground. Continue Reading →