C of Tranquility

C of Blue

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.

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!

Science + Autism Reading

When C first got his lung disease diagnosis, and then his autism diagnosis, I scoured the web looking for reliable sources of information and insight. Below are a few of my favorite science + autism websites, blogs and tweeps. What are yours?

  • Emily Willingham is a scientist and writer who has a son on the spectrum. She explores — and often rips apart — the latest in autism pseudoscience on her blog, her Forbes column, and on Twitter.
  • Cracking the Enigma, a blog by research fellow Dr. Jon Brock, focuses on “cognitive and neural mechanisms involved in developmental disorders including autism, Williams syndrome, and Down syndrome.” He also has a Twitter feed.
  • Left Brain / Right Brain is an excellent autism-focused science website.
  • Autism News Beat is a blog by the father of a 16-year-old boy with autism. The writer’s goal is to help journalists write about science, and autism in particular.
  • The Autism Science Foundation is a non-profit organization dedicated to helping researchers and scientists fund and publicize their work. It’s a great place to keep up with the latest in science-based autism research.
  • And, on a lighter and non-science-related note, my favorite Dad blogger.

We Want to Tell You

C alone

We want to tell you about all of C’s achievements.

We want to tell you how well he’s doing. We want to tell you that he’s reading well beyond his years, and that he’s developed a deep affection for his twin, frequently hugging him and saying, “I love you, brother.”

We want to tell you that he says, “It’s 7:70!” when it’s ten minutes past eight! We want to tell you that he sat still and ate a cupcake, and that he finally peed in the potty. We want to tell you all of these good things and none of the bad things.

But when we do, you say, “See! He’s going to be fine.” You tell us, “He’s probably going to be a rich scientist!” You implore us “not to worry so much!” You say, “I told you so!”

Continue Reading →

Four Things

Chalk boy

From my wife, in honor of Autism Awareness Month.

Four things parenting a child with autism has taught me:

  1. Expectations bring disappointment (a restful weekend away is anything but, yet suddenly wandering together silently through aisles at the public library, bliss).
  2. You have more patience than you think you do.
  3. Compassion for oneself and others brings instant happiness.
  4. The boy sitting alone in chalk on the playground will astound you.

“And you love him?”

File this under Stupid Things People Say

Yesterday my wife hosted a playdate with a couple of neighborhood kids and their nanny. It wasn’t all fun and games: my wife felt the nanny’s eyes on her as she changed C’s diaper (yes, he still wears diapers), and when she was comforting him when he bit his lip (sometimes small things really set him off, while bigger things do not). 

The nanny also asked probing questions: does C ever play with other children? (Well, yes, his brother.) Does he speak much? (When he’s comfortable, you can’t stop him from talking!) Did we do genetic testing when we were pregnant? (Uh…)

But the best was this little gem: “And you love him? You really love him?”

My wife, nearly dumbstruck, answered simply, “Yes, I love him.”

To which the nanny, reflective, replied, “I don’t know if I could. I think I would just cry all the time.”

Sigh.

This is the same nanny who often remarks how sweet C’s twin brother is. It’s true: M is happy, polite, and enthusiastic. He’s genuinely appreciative of the littlest things. Maybe this is what happens when you love a brother whose magnificence seems small to others.

//


Subscribe for email updates.

The Best Advice: No One Knows

snowboys@2x

When the evaluator finished telling us that, yes, C definitely had autism, I asked what this meant for his future. She sighed, said that was a common question, and then offered us the best advice we’ve received so far: “Don’t try to predict where your son will be in ten years, one year, or even a month. No one knows, and anyone who tells you they do is lying. These kids can surprise us, both for the better and the worse.”

Seems a million years ago that we received this pearl of wisdom, but lately I’ve needed to remind myself of it a little more than usual. It helps me get through particularly trying moments, those moments when I wonder, “Will it be this way forever?” or, “What will become of my son?”

No one knows, and there’s a sort of paradoxical peace to be found in that mystery.

Wonder

Car wash

C enjoying the drive-through 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.

Sharing Laughs

20130124-000408.jpg

C has a sense of humor. A pretty good one, in fact. Most of his jokes involve some form of word play.

For example, the other day he said he wanted to go down the apple stairway, and up the banana stairway. It took me a moment to realize he was talking about the A and B stairwells in our building. He thought it was quite funny.

Another: when asked if he wanted some Play-Doh, he replied, “No, I want Work-Doh!” Giggles and more laughter.

If he makes us laugh, he is overjoyed and will say the joke over and over. And perhaps this is the most critical point: C’s desire to tell us jokes is a way for him to connect on a deeper level, to share his thoughts, and to take pleasure in his ability to give us joy.

A therapist once told me that C’s sense of humor was somewhat unusual, and might be considered cause for hope. Sounds good to me.

Sharing Stairs and Stims

Stairways and Stims

In autism, a stim is anything done to the exclusion of other things, including interactions with others. Common ASD stims include hand flapping, playing with parts of a toy, repeating dialogue from a TV show or story, running in circles, etc. We all have tics, repetitious behaviors, and obsessions, but an autism stim is accompanied by a near total abandonment of the outside world; the person with autism is locked into their stim, perhaps finding comfort and peace in it.

One of C’s stims is walking up and down stairs, something it seems he could do without end.

Continue Reading →

The Question

Earlier this evening I overheard my wife talking with M about his twin’s “ASD.” At one point M said, “I wonder what ASD is like.” It was all I could do not to intrude on their moment by walking into the room and giving M a hug.

Like his parents, he really doesn’t understand what it’s like to have autism, but even at such a young age, he’s trying. I love that boy.

Sad Toy, Happy Toy

This guy — part of a vintage Fisher Price schoolhouse we found for the boys — really upset C. We had to put him away.*

angry-toy

No surprise: the letter tiles were a big hit, adding to our suspicions that C might be hyperlexic.

Happy Toy

* On a related note, a vintage Fisher Price town we got them had a jail. I guess in the early 70s, bullies and criminal detention centers were still considered an appropriate element of pretend play by toy manufacturers.

A Friend In Need

Lewis P is in the hospital.

Who is Lewis P and how do I know this? He’s a boy who goes to school with C, and he’s also one of the first and only people C has ever mentioned to us. In fact, C has described him as “his friend,” a proclamation so profound and surprising I don’t think I could ever forget the name.

I asked C if he had played with him today. “No, Lewis P is at the doctor.”

“He’s not at school?”

“No, he’s at the doctor.”

C says a lot of unusual things, so I asked my wife about it. Her expression was grim. “Yes, I heard he was in the ICU.”

So now there’s this. A little boy I don’t even know, but who has distinguished himself to me by being my son’s first official friend, and now he’s apparently in the hospital.

I don’t know you, little Lewis, but I hope you will be back at school soon. There’s a little boy I know who would like to have his friend back.

ASD Diagram

I designed the (hopefully) simple graphic below to help people understand the family of Autism Spectrum Disorders — as outlined in the DSM-IV — and how they relate to one another (click on the image to see a larger version). I did not include Rett’s Disorder or Childhood Disintegrative Disorder, as they usually receive their own diagnoses apart from an ASD.

As you can see, much of the confusion comes from the duplicative use of terms like PDD and ASD at both the category and sub-category levels.

It’s important to note that the just-approved DSM-V subsumes both PDD-NOS and Aspergers into one category called, quite simply, Autism. In addition, a new category called Social Communication Disorder has been created to hopefully account for children who don’t meet the new ASD criteria but still have deficits in the key areas of communication and social skills.

//

Let me know what you think on Twitter: @1asddad

The Tambourine

Tonight C walked up to me, holding a drum in one hand and a tambourine in the other. Smiling, he thrust the tambourine toward me and said, quite clearly, “You play it, Daddy!”

I was so shocked, I nearly forgot to take the damn tambourine from him. This was neither scripted nor prompted; this was a genuine request, directed at me, in the form of a verbalized desire to interact.

And interact we did: I shook the tambourine in time to his drumming for a good two or three minutes, and every so often C would look at me and smile as we played together.

Hope.

Questioning Autism? App is Available!

I’m proud to announce that our iOS app Questioning Autism? is available in the App store!

Questioning Autism? is an iOS app designed to help concerned parents understand the signs and symptoms of autism, and to convey their observations to their pediatrician. The app features 12 simple questions, and the ability to share the observations with notes via email. Parents and caregivers can track a child’s progress over time, and save their observations for multiple children. Also included are helpful resources and the ability to share the app socially.

Continue Reading →