Small victories

C's fingernails are a little long. Mental note: trim them during bath time tonight.

But wait. I haven't trimmed his nails in a long time. I haven't needed to: he's been chewing them himself. In fact, he was even chewing his toenails (flexible little bugger).

Anxiety.

The past couple of years brought a lot of it, and along with it came things like head-banging, shirt-chewing, licking (everything in sight!), and nail biting.

Most of the more obvious signs have abated since he's settled into his new school with its smaller, quieter classes. And now the nail biting is apparently gone.

So tonight I'll trim those little nails, and I'll picture the anxiety falling away with them. And I'll remind myself that progress isn't usually measured in big leaps and bounds, but in victories as small as overgrown fingernails.

The scream

There we are, a happy if weary traveling family, having lunch at a rest stop in Delaware, when C decides something isn't quite right. And so, in an instant, he emits the loudest, most ear-piercing scream imaginable. I mean, it's truly deafening. If you're within a few feet, your ears will ring for a while afterward.

It doesn't last long, this scream, but it's enough to scare the bejeezus out of everyone within one hundred feet — us included.

And now all eyes are on us, some frightened, some glaring angrily, and a few settling into knowing sympathy (or something approaching sympathy). Anyway, this is a relatively new tic C's developed. It happens most often when he's taken out of his routine and put into an unfamiliar, somewhat chaotic setting...like on a family road trip, at a rest stop in Delaware!

The first few times he screamed like this, I felt my face grow hot and red with embarrassment. Being totally honest, I wanted to stifle it, to cover his mouth with my hand. But, as I noted, it was over almost as soon as it started — one quick, piercing cry.

I can't say I'm getting used to it, but as with any of his past tics, we know that drawing attention to it will only reinforce the behavior. Yes, that includes negative attention. So we redirect as quickly as possible, get him moving onto the next thing and out of the moment. At the same time, I do my best to shut out any feelings of embarrassment, to ignore the stares and glares. They don't know or understand, and while I'm sympathetic to their ears, my focus is where it should be: on my son.

So if you're out — say in a rest stop in Delaware — and a kid screams at the top of his lungs for no apparent reason, take a deep breath, be sympathetic, and be glad it's not you.

Falling for Frosty

As we were leaving the school where C’s sensory gym is, he spied two cardboard Frosty the Snowman standees, each over six feet in height. He made an immediate hard left turn, cutting me off, and marched directly toward them. He pointed at one and said, "This one is Frosty." He pointed at the other: "This one is Snowman."

This seemed to please him greatly, so he continued: "Frosty!" Turns: "Snowman!" Turns: "Frosty!" Turns: "Snowman!"

With each turn he became more animated, until finally his pointy little finger pushed "Snowman" so hard it began to fall over. I lunged to grab the standee. As I did so, C spun and pointed his finger directly at the chest of Frosty, pushed hard, and yelped, "FROSTY!!!"

As Frosty started his own descent toward the ground, I let go of Snowman and lunged toward Frosty and, in doing so, managed to cross one leg in front of the other. At this point, my legs were completely intertwined.

And so, as Frosty hit the ground, I hit the ground, too...hard as a sack of potatoes. I didn’t even have time to get my hands in front of me. WHAP! Right onto the unforgiving elementary school linoleum.

A moment passed, and then came Snowman. Apparently I'd not stabilized him sufficiently before letting go. There I was, lying on the ground, two large cardboard snowmen on top of me.

A security guy and a custodian who saw the incident ran over to see if I was okay. I leapt up, embarrassed, and blurted something about being totally sober, which probably had the opposite effect. They chuckled and walked away.

In their wake stood C, regarding me with what can only be described as a slightly quizzical yet mostly disinterested gaze. He leaned over, pointed, and said one last time: "Frosty. Snowman. And Daddy."

What I’ve been reading – December 2014

Note: Because of the holidays, my December "What I've been reading" post is a little earlier than usuual. Here are some things I’ve read this past month that I found helpful, informative, or inspiring. If you like this and find it helpful, please share with others. Thanks!

Opinions and insights

Ability is more than the sum of savant skills "Autism is commonly conceived of only as a set of serious deficits, except for when it confers spectacular, miraculous-seeming, but isolated savant abilities or splinter skills. This is a problem." Read more

We’re Doing Autism Research All Wrong | MIT Technology Review "We’re sinking millions into the search for a 'cure,' even though we now know that autism is not a disease but rather a neurological difference, one that cripples some of us while bringing a few others extraordinary gifts." Read more

When I Slowed Down and Actually Listened to My Brother With Autism "I’m betting you have a loved one who you rush. Whether it’s yourself, your child, your sibling, your spouse…maybe you’re rushing language, skills, getting out the door on time. Don’t beat yourself up over it, but do go ahead and slow down." Read more

What’s MSSNG in Autism? "...this effort won’t help any of the autistic children today. Benefits may flow from the research one day, but the beneficiaries will be tomorrow’s children. Today’s children will be long grown up, for better of for worse." Read more

The Letter I Would Have Written for My Parents When I Was Still Nonverbal "I hope for any parent who reads this letter — coming from a now 26-year-old adult on the autism spectrum — that you never give up on your loved ones. The autism spectrum is wide and everyone’s journey is going to be slightly different. Become an advocate because by doing what you’re doing now, you not only give hope to your loved ones but you give hope to the autism community." Read more

The Hardest Part of Autism "And that is now the hardest thing about autism – my inability to shield him forever from judgment, ridicule and mean children and adults." Read more

On Autism Speaks' Suzanne Wright, the frustrated savior From the always excellent Emily Willingham: "If you admit that others can understand the people for whom you claim to speak, then you cannot position yourself as the savior. The Wrights founded Autism Speaks to save their grandson. When others build a bridge to understanding and acceptance, a savior is no longer needed. The raison d'être of their entire organization crumbles if people start building bridges past and through and around them between non-autistics and autistics." Read more

Science and news

SD (San Diego) Man With Autism Defies Odds, Graduates Law School. A lovely, hopeful story. Read more

Google Teams Up With A Controversial Research Group To Figure Out Autism "Google and an autism research group have launched a new program to help scientists study autism and come up with new treatment options." Read more

Gauging intelligence in autism over time "Ultimately, however, we should aim to be less reliant on tests designed for young children, as the activities used to measure IQ in toddlers and preschoolers are less relevant for adolescents and adults, and may fail to capture their true cognitive abilities." Read more

Risperidone has no effect on core symptoms of autism "Results from a ten-year study, published 19 November in the Journal of Child and Adolescent Psychopharmacology, bolster the idea that risperidone has no effect on the core symptoms of autism." Read more

New method helps resolve conflicting autism diagnoses "To diagnose autism, clinicians often rely on two standardized diagnostic tests: the Autism Diagnostic Observation Schedule (ADOS) and the Autism Diagnostic Interview-Revised (ADI-R). But the results of these two tests do not always jibe...A new method, described 28 October in the Journal of Autism and Developmental Disorders, aims to fill this void." Read more

The twin bond

We didn’t experience the almost supernatural bond between our boys that many other twin parents talk about…the secret language, the shared connection.

In fact, what we experience most of the time is two kids who exist not just apart from one another, but in separate worlds. Two boys who share almost no interests, as different from one another as any siblings can be (physical similarities aside).

And yet there are these moments when a bond does make itself apparent, its existence indisputable. For example, seeing C revel in M's enjoyment of an iPad app (see photo above), or finding them sleeping together, arms and legs entangled, faces an inch or two apart.

I now know they are connected — perhaps not in that special twin way, if such a thing even exists. But I know that, despite my earlier fears, my boys love one another very much. Even a newfound sibling rivalry is welcomed, because it means engagement, entanglement, connection.

And, once again, I find myself letting go of “normal" or “typical.” (What is normal or typical anyway?) Instead, when I can let go of those expectations, I find myself open to experiencing something else, something even better.