Light it Up Blue: sometimes the reflection is brighter and more beautiful than the flame itself

Our blue light

Our blue light

As I angled the camera to get a good photo of the blue candle, I saw that the reflected flame is more beautiful than the original. With all the talk of Holland* and dashed hopes that some of us face with an autism diagnosis, with all the planning and worrying still to come, with all the explaining and misunderstanding and misinformation in the world out there, with all the emotional collateral damage yet to assess, there is still a light that shines in the darkness of what my life would have been without him (and his siblings, who show such tremendous grace and humor under pressure). As much as ever, I embrace what I wrote in 1998 when I tried to describe what turned out to be autism: this boy is closer to heaven and hell than I will ever be on this earth. His unfiltered (or sometimes, overfiltered…) take on the world reveals the sublime and the absurd and gives me the courage to keep fighting demons that, without my children, surely would have overtaken me long ago.

But I know the roles can reverse. There are many who justifiably curse the cloak of darkness that autism drapes over their child. It’s impossible to be grateful for every moment; there are millions of them that are best forgotten. But it’s in those dark moments that we are most grateful for the light when it does return (if we can just remember where we hid the matches).

***

*The Welcome to Holland essay inspires many people when they first face a disability diagnosis, but Susan Rzucidlo’s Welcome to Beirut has always been my personal favorite for families on the spectrum.

Easter Monday, April Fools’ Day, Autism Awareness Month. The Mind Reels.

SONY DSC

Renewal and irony and reality all converging on a single spring day. Melting snow, green shoots, black earth. The extremes of New England’s seasons are the metaphor I cannot ignore.

I tend to roll my eyes on the awareness month for anything, and even more so for Autism Awareness Month because I’m conflicted about foisting upon the world an awareness of what I consider to be our private business. But making the world more navigable for our boy is part of that business and thus I need to try to find ways to use the opportunity that autism awareness month presents without seeming insufferable and needy (good luck with that, I know). And what is a blog for if not for saying something that I think might be worth reading? I ask myself all the time why I do this and most of the time the answer is that I write about it because I can’t not write about it. From my perch, autism awareness is as much about the journey and the humor and poetry borne of the angst and the crazy – it’s not nearly as helpful as what others are contributing to the dialogue, but it’s what I have.

So in a nod to the everyday awareness that we have of autism, I’ll post something every day (an essay, photo, or link to those who are saying it better than I) in April in hopes that something and interesting and good will come of it.

Today, John Elder Robison continues to fight the good fight for people with Asperger’s Syndrome in the wake of Sandy Hook.

Saturday Moment: “Is THAT the Holy Child?!” The Pieces Fall into Place at Mass.

The Scene

Our church as it looked in January 2013

For many reasons going to Mass is a production for us (I documented some of our more memorable visits), and so we do not attend as regularly as I would like. The politics of the Vatican in recent years did little to stoke my religious fervor but we do make frequent trips to the empty church to say prayers for those we love, and in particular to remember the young friend my son lost to leukemia last year. The choice of Pope Francis I last week led us to venture to Mass this past Saturday afternoon, in honor of the forgiveness, renewal, and the promise of a fresh start his papacy and this Easter season may hold for all of us. It didn’t hurt that our boy, after a sigh, seemed willing to brave the crowd if it meant a chance to recall his friend. So off we went, arriving early so we could get a seat with a good view of the altar and the Blessed Sacrament.

We usually sit in the front section a few rows back. Hanging from the vaulted ceiling high over and in front of the altar is a massive crucifix with a fairly graphic representation of Christ. It has always been there, in that spot. There we sat, with my boy and his iPod open to a picture of his friend. He had used the paint app to put a yellow halo on his head, and he held it up high so that it faced the Blessed Sacrament. As I reached up to lower his arm gently he looked at me in alarm, pointing to the crucifix as if seeing it for the first time.

“Is THAT Jesus?!” he said in a stage whisper. I nodded, two fingers presses to my lips to remind him to speak quietly and to keep myself from smiling.

“Is THAT the Holy Child?!” Suddenly, the connection between Christmas and Easter began to forge in his mind.

“What HAPPENED?!” I told him we would talk about it later but the questions kept coming.

“Is he dead? Who killed him? See the blood?” He turned the iPod so his angel friend could see, too. That almost did me in.

Finally, in the car I did my best to tell him the full narrative, Christmas to Easter, promising him that we will go back during Holy Week and see the stations of the Cross that tell the entire story of the Crucifixion. He was wary, and raised his hand, palm toward me.

“I’m good.” Then he thought for a minute, playing something in his head. I mentioned that we have a movie at home that tells the story of Jesus.

“Wait! I get it!” And then he did a perfect imitation of the announcer’s voice on the preview from one of his Christmas videos:

“JESUS of NAZARETH!! That’s him!” It only took, like, fifteen years.

When we returned home he bounded up the stairs to say hello to his sister. She came downstairs, laughing.

On this visit in January he didn't even notice the crucifix.

At that point he didn’t even notice the crucifix.

“What happened? He came up to my room, jumped on my bed and said church was AWESOME. He never does that when he comes home from anything, ever.” I told her everything, and she went up to his room and hugged him. A while later he emerged and called down to me, standing at the railing where I could see him.

“Mom, does Jesus make our hearts happy?”

His smile, his voice, and the way he had his hands clasped over his heart told me it wasn’t really a question.

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.

Saturday Moment: I Detect a Theme

The chase is on

The chase is on!

I don’t know why it is that we get so tired of some things while others endure. The excitement of chases has been there since the first game of tag in the toddler days. It is a cumulative process; we watch, do and draw the same things over and over year after year, just adding details and getting better. A few years back there was an Open Season for Rabbits and Ducks sign nailed to a tree in our back yard. I love that he added the latin name for Wile E. Coyote – he really empathizes with him even as he delights in the Road Runner’s narrow escapes. “That poor coyote, he keeps getting killed, and that road runner is just far too fast.” There’s a metaphor in there somewhere.

Looking Back in Hopes of Finding a Way Forward.

A parade of sparklers from last summer, about a thousand years ago.

A parade of sparklers from last summer, about a thousand years ago.

I think it is me who is regressing this January. We did a lot, learned a lot, and worried a lot in 2012. I am wiser but much less brave than I was a year ago, having gone from sending our boy away to camp for a whole summer to being reluctant to send him to school for even a day. Sickness and Sandy Hook (not to mention a totally dysfunctional Federal government) make me think we are more vulnerable than ever and while we have a plan (as of yesterday) to get him healthier I haven’t the slightest clue how to rebuild our confidence. We were always wary of the outside world; now the outside world is wary of us. When we ventured out over the holiday season I noticed that I stopped using the word “autistic” to explain odd behaviors – in fact I avoided saying anything at all to anyone about him, and made more of an effort to avoid eye contact. I am ashamed that I want to be invisible, angry that people are spreading ignorance and fear about autism and appalled that I have allowed it to affect my behavior. Still, we go out a lot and, like many parents these days, we do our best to show and tell our children how much we love them. And, quite literally, we hang onto them a little tighter than we used to.

Happy New Year.