The Mystery of 2009 Returns

IMG_3571

Tonight we went out for an early dinner, and I could not convince the boy to tear his eyes away from the iPod. Usually he will at least look out the window at the cows on the hillside. Nothing doing. He met my eyes and said with frustration, “Mom, I am just too afraid of the world.”

“Why?”

“It’s just since 2009, when I was 14 and I saw the dates.”

“What dates?”

“Here, let me show you.”

He taps gently, furiously, and precisely on my phone, spending a lot of time on the Wurdle app, and then hands it back to me and sighs.

“Never mind, I can’t find it.” But then he takes it back and opens the calendar. Nothing remarkable.

“Dates. Birthdays. Worrying about death.” He hands back the phone and puts his earbuds back in.

Conversation over.

This is the beauty of blogging. I can go back to the summer of 2009 and see what I wrote – because the dates and the fear and this specific kind of withdrawal were all new to us then. But even after reading what I wrote then I don’t really know why all of those fears showed up today or how long they will stay – it could be as simple as the disruption of a half day at school or the disappearance of his memory bracelet from his dead friend. Or perhaps it is the big birthday that is coming up soon – or maybe it’s my worry about that reflected on him. He has my feelings before I do sometimes, I think.

Spring is coming; we’ll figure it out.

Saturday Moment: Going to the Movies is a Contact Sport

IMG_3528We are movie people. When our kids were small they didn’t have special showings for kids and people with autism like they do now. I think it’s great that they do, but we’ve kind of developed own set of tools and rituals that get us through the movie experience. For many years our boy spent every movie happily on my lap, with my arms wrapped around him and his hands firmly over his ears. That was how he managed the sensory overload of a loud movie. When he moved to his own seat he would do one of two things (after eating exactly half of his popcorn and giving the rest to Dad), lay his coat on the armrests and go to sleep half leaning on me and resting on the coat, or put his head on my shoulder and have me put my hands over his ears while he watched. I am in awe his use of sleep as a coping mechanism when he is overwhelmed or distinterested. How many people do you know who can sleep soundly – snore, even – through The Avengers, Thor, Iron Man 2, and 8 innings of a Red Sox Game at Fenway Park?

It’s been a lackluster winter for family movies (with the notable exceptions of Life of Pi and Lincoln, both of which he sat through, riveted and perfect) so we haven’t been in months. Finally, cabin fever drove us out of the house to see Jack the Giant Slayer and this time the boy and I found ourselves watching shoulder to shoulder as I waited for him to lean over and nod off as the beanstalk wound its way into the sky. But the lovely girl and the prospect of romance kept him awake this time, and he kept whispering to me “Do you think Jack will marry the princess? Are they in love? Are they going to get married? Will her father the king approve?” Usually the only questions I get are whether this is a short, medium or long movie, so the specific plot questions and the arm tapping and hand squeezing and his turning my head to look at him when he spoke to me were all new in this setting, and most welcome (but his brother did move one seat down).

If you sit in the front you can put your feet up and no one cares.

If you sit in the front you can put your feet up and no one cares.

But the best part was when the grotesque giants made their first appearance and I instinctively raised my hand to cover his eyes and at the exact same moment he did the same, covering my eyes with his hand. There we were, side by side, with our hands clapped firmly over each other’s eyes, trying to keep each other from being scared. He knew it was funny, too, even as he kept his hand firmly in place until we agreed that we could look at the screen again.

I know it’s a milestone, whatever just happened there. It’s a new level of reciprocity and sophistication, a point at which he now wants to take care of me the way I try to take care of him. It’s what we wanted and worked for but not necessarily what I expected to happen, because at some point expectations get to be counter productive when you are raising kids, whether they are typical, autistic, or anything else. Goals are essential, but expectations just get in the way of seeing and responding to what is right in front of you, and if you are lucky someone will put their hand over your eyes during the scary parts.

A Trail of French Fries Leads the Way

A trail of fries

A trail of fries

I took this photo in the parking lot of the Lurie Center in Lexington, Massachusetts, a branch of Massachusetts General Hospital that serves children and adults on the Autism Spectrum. These are iconic fries, a not-so-secret symbol of what it often takes to get an ASD kid to and through a doctor’s appointment; I can only imagine the tears spilled when they hit the pavement. The clinicians at the Lurie Center are among the best in the world and yet even the skilled and gentle support they offer can’t always extend out into the parking lot where worried parents and anxious kids struggle – sometimes mightily – to fit yet another specialist appointment into their lives.

But with this photo I see and offer up hope that persistence pays off. Not always, not when we want it to, but it is hard for me to adequately convey my joy at seeing these fries and knowing that they were not going to cause me the meltdown we once might have had just seeing them ice cold on the ground. My boy looked at them and remarked, “Someone’s been to McDonald’s!” and then danced – literally, with iPod – toward the entrance. Next to the door there is a wisely placed trash can, which he glanced into and noted, a little somber now, “There’s the box.” Some part of him knew and felt the pain of the child whose fries had met the wrong fate.

It was a lively day in the waiting room, with several families with antsy children waiting to be greeted by doctors and therapists. We recognized one clinician as she came out to greet a child. We knew her from work we did as part of a research group a few years ago, and she delighted at seeing our boy. He spoke politely with her and then began to tease me about what he wanted from me in exchange for being brave about having his blood drawn (more research – that’s another post – and the covet du jour was yet another Scooby Doo movie) that day. I saw her look at him, and at me and as she listened to us negotiate I saw on her face a measure of disbelief that this could be the same boy she knew in 2009. She looked at me and lowered her voice and said, “Do you know how lucky you are?” And even though I said yes, later I had to stop and take stock of how far we have come from our french fries in the parking lot days.  Our challenging times are by no means gone but they are different, and it is best not to dwell on what they are like now – they will return soon enough.

The Fixit Playlist: 30 Songs that Reset My Brain

Taking a sunset drive

Taking a sunset drive

A few years back I was riding with a friend and fooling with the cd changer in the car. Rage Against the Machine came roaring out of the speakers, practically ejecting me from the car. “That’s my fixit playlist,” he laughed, “for when I need to reset my brain.” His list included Radiohead, The Clash, all music that would get adrenaline flowing in just the right way for him. I thought it was a brilliant idea and started compiling my own Fixit playlist. Being me, I came up with several lists and for years now have been burning Fixit cds with dates on them to make sure I knew when I had finally hit on the real deal. The criteria were that it had to improve my mood under any circumstances and when played the second or third time I did not start skipping songs to get to one that worked – they ALL had to work so  could leave it in the car player for days (weeks) and at time and know I had access to the necessary music. I drive almost every day for long distances and do much of my best thinking in the car, so the music component is key. Someone in our ASD support group once noted, “I do all of my best crying in the car.” It’s true – the car is where we pull it together, and we need the right music to get us to the our next destination (school, doctor, therapist, IEP meeting, liquor store, etc.) in the right frame of mind. A few weeks ago I realized that I was always reaching for the April 2012 disc, so here’s what’s on it (with a few add-ins because even that one is missing some key songs).

This is my list. It’s not about taste, era, nostalgia, or identity. It just works. What’s yours look like?

I started to put in links for the individual songs but it was clear that many of them would not lead to the actual music, so I put in links to the artists instead (and, as an aside, some of these official websites are really creative, really cool or really hilarious).

Saturday Moment: What Are You Going to do With Me?

Dinner out earlier this week

Dinner out earlier this week

It’s the end of one crazy week and the start of another. We’ve had almost every kind of moment – panic attacks, unrequited love, dancing for joy, teenage rebellion, violations of personal space, bursts of creativity, and early morning hugs before school that reset our relationship from whatever happened the day before. And today an exchange – scripted, yes, but genuine all the same – that is both typical and necessary following transgressions large and small:

Me: “You need to stop ______, please.”

Him (hands on hips, smirk on lips): “What are you going to do with me?!”

Me (deadpan): “Love you forever.”

Him (nodding): ” That’s what you’re gonna do.”

Yep.