Not Broken

"When I was small, I didn't even know that I was a kid with special needs. How did I find out? By other people telling me that I was different from everyone else, and that this was a problem." — Naoki Higashida, The Reason I Jump

My latest fear: I don't want C to grow up thinking something is wrong with him, that he's broken or damaged. But how? He knows something is different. He's used the words "autism" and "ASD" in reference to himself (and that's okay). He knows his twin lives a different life, goes to a different school. He knows he has special people who come to our home to work with him almost daily. He experiences all the doctors appointments, the evaluations. He's contended with being attached to oxygen equipment 24/7.

So what can I do to prevent him from thinking he's broken or damaged?

I'm not sure, but perhaps it starts by not thinking these things myself.

C Loses a Friend

We had to put our little cat Misha down today.

I adopted her about ten years ago from an agency who told me she was feral and might never be very friendly. Wrong: she was a complete love, especially toward the boys and, in particular, toward C.

For his part, C had developed a deep affection for Misha, and that's saying something because C doesn't usually take notice of other living creatures aside from his immediate family. When he was a baby, Misha would sleep near or even atop him. Otherwise a skittish cat, she never ran away from C despite the overwhelming noise and frenetic commotion that attends his presence.

Misha relaxing near a sleeping (and very young) C.

When C seemed so distant shortly after his autism diagnosis, he still took notice of Misha, often stopping to pat her on the head. Sometimes when he came upon her, he'd smile and say in a sing-song voice, "Meeeeeshaaaaa!"

I recently involved C in household tasks by asking him to feed the cats. He'd carry their bowls with pride, always giving Misha her bowl first. "Dinner, Misha!"

When she got sick, we began preparing the boys for the inevitable. C was devastated. Sometimes we underestimate him, we think to ourselves, "He won't get this." He did. He has. At points over the past few days, he's sobbed so uncontrollably that we thought he might run out of breath.

C, to me, is something of a guileless, pure spirit and Misha, being a somewhat feral cat by nature, was the same. I think he sensed that in her, and she in him, and they connected on that level.

Anyway, we've struck a deal: we told him we'll get another cat. Changing emotional gears as quickly as a Ferrari (or any typical four-year-old), C proclaimed, "I'm going to name her Scrappy!" (At one point he also suggested the name "31," which I think is pretty cool, too.)

A closing note to Misha: You will be missed. You were a sweet pet, a good companion, and most of all you made C very happy. For that last bit, I'll be eternally grateful.

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.

Not Even Wrong

Shortly after C's diagnosis I began reading everything I could on autism. I focused on possible causes, potential therapies, and what we might do to make things better.

After a while, I needed a break; I wanted to read something that wasn't autism-related. One of the last books I read before C's diagnosis was The Murder of the Century by Paul Collins, a smart and insightful non-fiction account of early 20th century journalism and its handling of a terrible crime.

Since I liked his writing, I decided to look for other books by Collins. Imagine my surprise when I discovered that he'd also written Not Even Wrong: A Father's Journey into the Lost History of Autism. The reviews were glowing, and the back cover description enticing:

Not Even Wrong is a haunting journey into the borderlands of neurology — a meditation on what 'normal' is, and how human genius comes to us in strange and wonderful forms.

The book captivated me; besides being beautifully written and sincere, it's a touching account of a parent's journey shortly before, during, and after receiving an autism diagnosis. More, though, it provides a wonderful and telling history of autism, and paints fascinating portraits of historical figures, infamous and famous, who were likely autists themselves.

Not Even Wrong was the first thing I'd read — or even really experienced — that helped me come to grips with the diagnosis and even begin to embrace it. I'd like to describe this transformation, but I don't think I'd do it justice. Instead, I'll just cite a couple of passages that demonstrate the sorts of insights that, to me, were revelatory:

"When Morgan's diagnosis first came in, all I could think of was: How do I fix him? How do I make him normal again? But there was no again, not really, because there never was a before. He has always been this way: it is who he is. Still, I wanted him to be able to fit in, to not have to feel that he was different. Just some special classes, some special help, I'd figured, and he can get along in the regular school classes, he can be mainstreamed. And I supposed it's a fine thing to fit in, when you can. If he does, that will make things easier. And if he doesn't?..."

And this, on trying to mainstream:

"...and the problem with pounding a square peg into a round hole is not that the hammering is hard work. It's that you are destroying the peg. What if normal school makes you abnormally miserable? And what if growing up into normal society makes you a miserable adult? Is that success? Is that normal? Do you want to be in the mainstream if it's going to drown you?"

And, finally, this:

"Autists are described by others — and by themselves — as aliens among humans. But there's an irony to this, for precisely the opposite is true. They are us, and to understand them is to begin to understand what it means to be human. Think of it: a disability is usually defined in terms of what is missing. A child tugs at his or her parents and whispers, 'Where's that man's arm?' But autism is an ability and a disability; it is as much about what is abundant as what is missing, an overexpression of the very traits that make our species unique. Other animals are social, but only humans are capable of abstract logic. The autistic outhuman the humans, and we can scarcely recognize the results."

I've recommended Not Even Wrong to several parents after they've received an autism diagnosis, but I would also recommend it to anyone — friends and family included — with an interest in history, neurology, psychology, autism, and unconditional love. You won't be disappointed.

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.