Whose journey is this?

I started writing this blog to give something back.

When C was first diagnosed with autism, I wanted to learn as much as I could. A big part of my research included reading ASD parent blogs, some of which were so helpful that, after a while, I felt I might like to share what I was learning, too.

Over time, however, I was reading fewer parent blogs and more blogs written by people with autism. As my son is still young, hearing from older people with autism was revelatory and inspiring.

And so lately I've been wondering, whose journey is this, anyway?

As someone who now follows autism closely — including the political, social, scientific, financial, and philosophical perspectives — I feel the focus is still mostly on us parents and what we go through, and not enough on the people who actually have autism.

Or, as Tommy Christopher recently put it, "Autism is not about you, Jenny McCarthy, Joe Scarborough, Autism Speaks, autism parents, and shitty reporters. It’s not about how hard your lives are, or what saints you are for not murdering them, or what bogus science you’re spreading. It is about the children with autism, and the adults that they become. If you love someone with autism, if you care at all about them, you need to fix yourselves. A good place to start would be to listen to them."

I'll continue to share my experiences as a parent, some of which are difficult. But as I write about this journey, I want to be careful to make it clear that this is not a tragedy, and we are not victims. Yes, the system is broken. Yes, there are challenges, just as there are challenges in any life. Yes, I have fears and frustrations.

But mostly I'm happy because my son is awesome, and on a daily basis I consider myself damn lucky to be his dad.

...

I started writing this blog to give something back.

I wanted to help parents just as I'd been helped by others. That hasn't changed. But what I've come to realize, and what I hope to share with others, is the perspective that what matters most isn't us parents, but our children...our children who will become teenagers and then adults.

This is their journey, and we're just along for the ride.

Our Sunday Ritual

Sunday mornings I take C to a social skills class. We walk hand-in-hand through the dappled shadows cast by big trees, then board the subway. I put headphones on him because music helps drown out the noise that gets him agitated. He sits peacefully, sometimes gently rocking. (He seems to like Herbie Mann and Lionel Hampton the most.)

On the subway he likes to announce each station before the PA system does. Depending on his volume and enthusiasm, people regard the pronouncements with looks ranging from approval to worry.

At our stop we head to a Starbucks for juice and coffee, then through Chinatown over to the place where class is held. It's surprisingly quiet on the normally bustling streets.

Along the way, we're sure to see a dog or two, and this delights C. Except the ones that yap. Of those he'll say, "That's a Startling Dog." (The first few times I thought he was calling them Starting Dogs, which confused me greatly.)

After class, we have a little lunch at Whole Foods. He sits through the entire meal (a true rarity) and sometimes I can even get him to talk to me a little bit.

"How was class?" (Wait) "How was class?"

"Good."

"What did you do?"

"Piggy."

"Piggy?"

"I made a piggy."

"Did you play with anyone?"

"Dylan is purple."

"Why is Dylan purple?"

"Because he is!" (Bursts into laughter.)

We have several more Sunday morning social skills classes coming up, so the ritual of our little outing together will continue for a while. I only wonder what color Dylan will be next week.

A Happy Anniversary

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.

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.

C of Tranquility

When things are crowded, bustling and noisy, C will often find a quiet place to relax.

Such was the case this Sunday at a busy playground: C was having a ball running around and generally making merry when I think it got to be a bit much for him. He didn't have a meltdown or otherwise fall apart. Instead, he found a nice soft patch of blue foam flooring (did I mention this was a pretty cool playground?) and chilled out for a few moments. That's when I snapped the photo above...a break from all the black and white on the site for a change.

Once, when we were at an apple farm, C disappeared. We found him a few moments later inside the empty engine compartment of a tractor, his big eyes and wide grin beaming in the dark refuge he'd found for himself.

A few weeks ago we were at a local playground when C was lying on the ground at the bottom of a slide. Kids were going right off the edge over him, oblivious to his presence, and he was happy as a clam lying there on the ground, getting dirty as a chimney sweep, but still being part of the action in his own unique way.

A concerned mom walked over to me and said, "I think something may be wrong with your son."

"No, he's okay. He does that."

"He's been lying there for about 45 minutes. He might be sick."

"No, he's smiling. See? He just likes to lie quietly sometimes."

"Are you sure? I mean, kids are going right off the slide over him. He could get hurt."

"He's fine. I think this is his way of playing with the other kids."

Raised eyebrows. "If you say so."

I do say so.

I no longer see these moments of separation from social action as problematic; I'm coming to appreciate his ability to know his limits and find a little bit of calm.