A Happy Anniversary

coxygen@2x It's hard to believe we lived over 2.5 years with 24/7 oxygen equipment — tanks, compressors, tubes — attached to our son no matter where we went. We kept explosive O2 tanks in our home, traveled with them in our car. We wrestled with yards of cumbersome (and tangle-some) tubing wherever we went. It wasn't easy and I didn't always handle it well, though C always did.

We'd constantly do oxygen math: "Okay, if we're going out for 2 hours, and he's at 1 liter per minute, we should be good with one or two tanks." "We have 7 full tanks in the closet, so if we only use two tanks a day we won't need another delivery for about three days."

We endured the stares of strangers who probably wondered why we were traveling with a tiny spaceman. We had prolonged hospital stays where we felt totally isolated and alone; scary periods where no one could tell us what was going on or if C would even survive; and watched as C was put under anesthesia a few times, including once for a lung biopsy.

C last year hamming it up with my glasses and an oxygen tube.

But that's all over now. Last week was the one-year anniversary of our pulmonologist giving us the green light to take C off oxygen.

We still use a pulse oximeter at home and school to make sure C's "sats" — oxygen saturation levels — are good (they are). We still need to be careful about viruses and other airborne nasties. And we'll likely never know whether the disease is actually gone or simply in remission. Plus, there are still a couple more tests the specialists want to do — a sleep test and something called a hypoxic challenge test to see if C can travel on an airplane (C has never met his grandmother who lives in California because her health problems prevent her flying, and we still don't have the green light to put him on an airplane).

Still, things could have been so much worse, and for many of the parents we met through the chILD Foundation, they are.

So once again, as rough as things have been, we're grateful and appreciative for how they're turning out.

Stay healthy, C. Your parents are a little exhausted.

Evening Ritual

He's beautiful, so calm and peaceful, asleep in his bed. He lies under a weighted blanket, stuffed animals on all sides of his head, fulfilling whatever sensory needs he has. I wonder what's happening under those curly locks, inside that amazing brain. Is he dreaming of the day gone by? Imagining tomorrow? Being chased by monsters or petting the cat?

I put my finger in his semi-curled hand, and feel his grip, his fingers warm and soft. Is he aware I'm with him? Does it matter?

I lean over and whisper into his ear, "Never forget: you can do anything you want. I believe in you." Sometimes he stirs ever so slightly. Once or twice I detected the trace of a smile.

Not wanting to wake him, I get up to leave. Before I do, though, I turn back to gaze upon him one last time, trying my best to capture a mental image I can keep with me. These days are going by so fast now.

And I wonder, will my words make their way into his mind? Do they have any effect?

Does it matter?

I don't know, but I do know that the very act of saying these words, this non-believer's prayerful affirmation, fills me with hope and joy.

The Kissing Bandit

The Kissing Bandit Just a moment. What's happening here? The boy with autism has gone in for the kill...er...kiss.

M was relaxing quietly (for a change) on the couch when, out of nowhere, C attacked him with a spontaneous shower of affection, much to M's delight.

I don't think this comes naturally to C, but every day we try to show him how pleasurable it can be to seek and receive affection from others. I guess our attempts are paying off, because he's turning into quite a little kissing bandit.

And, it substantiates something I've been coming to understand from reading the words of older children and adults with autism: it's not that people on the spectrum don't crave the giving and receiving of affection; it's that they don't always know how to go about it.

Let the lessons continue!

Wonder

Car wash For my regular readers, I apologize for the shortage of posts lately. A lot is happening in life at the moment, most of it great, one thing bad (more on that in the near future), in addition to the usual craziness.

In the good column, C is making tremendous progress. He's beginning to speak in full, articulated sentences; he's expressing emotions (and deep affection) often; his sense of humor is boundless; he's still off oxygen; and he's more connected and present than ever.

On top of all that, I've noted a real sense of wonder about him lately; he seems genuinely curious about the world around him...not just obsessions and repetitions, but more.

I'm full of hope these days.

PS Here's an absolutely hilarious and genius post where B's dad asks the question, "Can you learn everything you need to know about my autistic son from a Slush Puppy drink?" Spoiler: the answer is yes.