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.

Gratitude

I have not always been the most grateful person. In fact, when I used to hear people talk about how gratitude was a gift, I thought they were being a bit disingenuous.

Then, over the span of a few years, a lot of stuff went wrong. I lost dear friends and family, both to untimely deaths and departures. C developed serious health issues, and developmental issues followed soon after. My career was foundering, and financial worries came along for the ride.

But then. Nestled in among the bad stuff was a lot of great stuff. Some of it was new, a lot of it was old, things I just hadn’t noticed before. (Maybe because, you know, I wasn’t looking for it.)

A good portion of my cynicism faded away. My sense of outrage mellowed. I realized that, compared to most people on this small rock, I’m doing pretty damn great, even after taking the bad stuff into consideration. When I looked at it that way, I realized I’m a pretty lucky guy.

So I’m grateful.

Life isn’t meant to be easy or fair. It’s not necessarily meant to be anything, in my opinion. It is, as they say, what you make of it.

So I’m trying to make mine a life of gratitude. (Wish me luck.)

Oh, and Happy Thanksgiving!

What I’ve been reading – November 2014

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!

Divisions in the autism community. The tragic murder of little London McCabe this month has sparked a lot of discussion about how autism is represented in the media and elsewhere. In a Facebook post which argues that divisiveness in the autism community might actually be a good thing, the always excellent Invisible Strings writes, "Today, thanks in large part to the internet and social media, autistics are contributing their own perspectives. Turns out: we have a slightly different view of things. We don't want to be hidden away or eradicated. We want respect.” He goes on to write, "Negative views about autism are the norm...and for too long, they were the only view. Division means that new voices are being heard. This is good.” Read more.

Ido in Autismland: My Speech at the Autism Society Self Determination Conference. Ido shares a recent speech he gave. "I warn you about one thing though. A consequence of teaching autistic people to type is that we have opinions and we have determination. Once we can express them we will demand a voice in our own futures.” Read more

Jerry Seinfeld and Autism. This month, Jerry Seinfeld said he has come to believe he is somewhere on the autism spectrum. Reactions to his comments ranged from supportive to outraged. John Elder Robinson, author of Look Me in the Eye, offered an interesting point of view, including this: "The 'my autism is worse than yours' is a counterproductive and destructive way of thinking. Look at depression and Robin Williams. He looked pretty successful and functional a few month back, didn’t he? But now he’s dead. None of us can know the struggles of another. There is no better and worse in autism’s affect.” Read more

Therapy for autism may alter brain activity, behavior. A preliminary study shows promise for Pivotal Response Therapy. "Following the treatment, seven children with autism showed enhanced activity in the medial prefrontal cortex — a brain region known to be involved in social cognition. By contrast, six untreated children with autism showed a slight decrease in brain activity in this region.” We’ve had positive experiences with this form of therapy for C. Note: this study is preliminary and small, and should be taken with a grain of salt until more studies and reviews can support its thesis. Read more

Rise in autism fueled mainly by diagnostic changes. Yet another study, this time out of Denmark, which suggests there is not really an “epidemic” of autism. This particular study, "published 3 November in JAMA Pediatrics suggests that up to 60 percent of the increase in autism prevalence in Denmark between 1980 and 2011 stemmed from diagnostic changes in that country.” The other 40% was attributed to greater general autism awareness. As for that so-called epidemic, the article notes that “…most people who talk about an ‘epidemic’ of autism in the U.S. are referring to a chart that maps the disorder’s dramatic rise after 1985. But many of them may not know that autism didn’t exist as a diagnosis until 1980. Before that, it was called childhood schizophrenia.” Read more

JRC Survivor Speaks Out (Part 1 of 4) "Hi, my name is Jennifer. I am diagnosed on the Autism Spectrum. Like so many of us, I have endured restraint, seclusion and aversives throughout my life, including seven years at the Judge Rotenberg Center. This is some of my story.” A four-part essay on the horrors inflicted to this date upon autistic individuals at the JRC. Start reading (part 1)

Naturopathy vs. Science: Autism Naturopaths are hopping on the "cure autism" bandwagon, supporting all manner of unproven, often dangerous and painful treatments. Read more