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.

Friendship, Take Two

A lot of people talk about becoming alienated from friends – even family – when they have a child with autism.  Part of it is the total preoccupation that comes with addressing a newly diagnosed child’s needs – you don’t have the energy or the interest in keeping up your end of the conversation on things that used to matter. Many marriages do not survive this phase, let alone friendships.  Granted, for some people it isn’t a phase, because depending on the intensity of the child’s needs, that preoccupation doesn’t ever subside and there is a full-scale retreat into a necessarily specialized world.  But there is usually a point at which you look up from your computer or IEP or daily schedule or home log and think, “I miss my old friends and the way I used to be with them.”  Despite the fabulous relationships and real camaraderie I have with the friends I have made with kids on the spectrum, I get the feeling that I have somehow lost something so valuable to me in my younger years.  It’s real work to remember the person I was and to figure out whether any of the old me is left.  It helps to have a partner who shares the emotional care of our child, especially because my parents have already passed and taken with them the objective (kind of) view of my younger self.  I know we change as we get older and that midlife naturally brings on a certain kind of navel gazing and regret, but there’s nothing like parenting a person with an alternate reality to really turn your self-image on its head, so to speak.  But if you have typical children you are also raising you need to have one food planted firmly in their world, and that, too, can be alarming as you remember your clueless adolescent years and find yourself alternately missing those times and being embarrassed by them.  At this point I am haunted by my self-absorbed teenage self and the graying face in the mirror – all the versions of me in-between are currently out to lunch.

But now, suddenly, I am encountering friends who are coping with challenges that I grappled with earlier in my life.  Aging parents and chemically dependent relatives, like an autism diagnosis, are now sending others into crisis mode and now I am the one on the outside looking in, and I see that it is hard to know how to be a friend to someone immersed in crisis.   I have to remind myself to be a good listener, and to understand when to ask questions and when to change the subject.  The hardest thing, surprisingly, is to not get frustrated with them when I think they are focusing on the wrong thing.  When talking with parents of children with special needs you develop a brutal battlefield type of honesty that allows you to tell someone to find a new doctor, hire a lawyer, or call the Department of Education.  That kind of candor does not serve well in these situations, any more than it did for me in that first year after the autism diagnosis when I could not bear to take my son in for some kinds of testing because I knew it would be torture for him.  People who tried to push me into action only sent me deeper into the cocoon I created for my family as we plotted our next move, which I hoped would result in the emergence of a fully recovered child.  With the miraculous help of the internet, I plotted the steps that I could take – I think of that scene in Indiana Jones and the Last Crusade, in which Harrison Ford has to close his eyes and take the one big step to cross the chasm that stands between him and the Holy Grail.  It is a hold your breath moment, followed by many moments in which people trip lightly over the same threshold that took such courage for Indy to breach because he has led the way.  You can’t push anyone into acceptance or advocacy in a difficult situation; they have to take the first step themselves and in their own time.

As I think through this process of learning to properly reciprocate friendship again I recall a moment from last summer, when I visited a lifelong friend (some friendships did survive the crucible) in Iowa at her mother’s house, where I spent as much time as I did my own house.  I was so delighted to be back in Cedar Falls after so many years, showing my youngest son the old neighborhood.  I sat for a spell with my friend and her Mom, and we caught up on events old and new, and at the end of the conversation her mother observed, “You know, I thought that living on the east coast for all this time would have changed you, but you are just the same as you always were.”  Even though I have actively worked to preserve my inner Iowan, it wasn’t until that moment that I knew a kind of success at being myself.  All of the angst, all of the work, all of the proving myself in various venues, had not eroded who I was after all.  But there is still work to do getting back in touch and on track with friendships that have allowed autism to get in the way and to learn how to support people who are facing issues very different from ours.  That process remains work in progress.  I suppose that is what is known as life.

Washington Street, Cedar falls, Iowa, June 2011