Wednesday, December 22, 2010

The Autism Gospel - "Are we through changing yet?"

Most days are really great. We are past some of those more difficult phases that accompany early diagnosis. I remember the days of detective work in which I wondered if actions stemmed from the neurological deficit or behavioral patterns set into motion by said deficit. I remember speculating if some of his self-flagellations would be something we’d face at the end of every day for the rest of our lives. The holidays have always been especially tiresome. No one really believes that the extra wattage put off by our Christmas tree adds up in our sensory index. I know exactly how many Christmas movies, carols, light shows and other assorted holiday sensory exhibitions it will take to throw us into a meltdown. Don’t be jealous…it took me almost eight years to learn.

The real issue is that as excited as Noah is about the holiday season, it brings an element of change into our daily schedule. The anticipation of the change stuns us before we even begin to process the expectation of what the holiday brings. Today has been one of the days when I’ve noticed more than others just how difficult this is for us.

It began with the daily trip to the Advent Calendar. As Noah placed the numbered felt object on its corresponding spot on the calendar he announced how many days we had left. Soon his fingers began that rapid tapping. Methodically, his thumb meets each finger on that given hand. Beginning with index finger and proceeding to pinky finger and then back again, both hands simultaneously calculate unseen factors. Then we begin to plan for the day ahead, as well as for the remaining days of this week. (And help me Jesus if the schedule changes this time of year!)

Today our plans were to clean the house together, work in the yard and then make dinner. After today was sufficiently mapped out, Noah asked what we were doing tomorrow. I should have known it would throw him for a loop but sometimes even I forget how much I have to prepare him in advance. I said, “Tomorrow is our day to have Christmas with your cousins.” He spun on his heel and look at me incredulously. “It’s not either. We do that a Sunday. Tomorrow is Thursday. Tomorrow is also not Christmas day. I can’t give them their gifts tomorrow.”

You see, for Noah it is all about the action of him giving the gifts. He will wordlessly open his own presents, but his real joy will be in seeing his cousins open what he gives them. Because the action of giving rests on Noah, I have inadequately prepared him for this even by moving it up in the holiday calendar. After I explained why we were making this change, Noah quietly retreated to his fortress of solitude – his room. Unfortunately, I had plans for that room right about then.

Generally, Noah’s room looks like rats might vacation there. While it is all arranged by some system involving texture and size and patterns concealed to the human eye, to me it is an abomination with which I’ve learned to live. But today, the sheets on his bed needed to be changed. I typically do this on days when he is at school so he doesn’t know I’ve done it, but I thought we could handle it. I was wrong.

I asked for his help in stripping the bed, thinking it might give him a measure of control in the situation. Ignoring the sound of his hyperventilation, I removed his pillow from its case. I thought he was going to pass out. While he was able to allow me to take the dirty bundle, he began to stim as I carried them to the laundry room. All the while I explained to Noah, “We have to change your sheets Noah.” He screamed, “Not change!” – which really irritated me because we both know good and well that I ALWAYS get the very same sheets back on the bed before nightfall! So I ignored him. But Noah couldn’t ignore me, or what was happening.

As the washer consumed his sheets with soapy water Noah asked, “When will we be through changing them?” I sighed and said, “After they wash, they have to dry. It’s going to be a while.” He left the room but returned at the change of each cycle of the washer. During the spin cycle I thought I might have to call the paramedics. When the washer finished it’s work he announced, “We are through changing!” I said, “No. Dryer.” He cringed.

I busied myself with some studying to keep from loosing my mind with worry at his continued self-talk as he comforted himself that he was “almost done changing”. I was ripped from my intellectual haze by the dryer buzzer. I always keep the buzzer off but Noah felt like we should turn it on so we would know immediately when we “were done changing”. Unfortunately, it took several of those super-sonic, earsplitting buzzes to completely dry his sheets and quilt. By the third buzz he was doing the “Charlie Brown dance” (you know the one the kids do while Schroeder plays) in the kitchen and I was considering running away from home altogether. Please remember – all I’m trying to do is change the sheets!

It has been a few hours since I restored order to his room, but his nervous system is done for the day. He is stemming so loudly from his room that I’ve got the television set at a volume I could hear from the sidewalk. Today, I feel like a mean mommy because, today, I forced change. A few moments ago I wondered if God has these exact same moments.

I’m changing a lot of things in my life right now and I’m pretty confident God is directing each change as only he can. I’ve got a lot of friends who are experiencing this holiday through change. One is spending her first Christmas morning without her children due to a custody arrangement. Another is spending an anxious holiday unemployed. Still others are in the midst of divorces or grief or struggles or illnesses that are changing the people they once were. Like Noah, many of us are yelling “Are we through changing yet!” Some days it appears to me that change is the only constant. But I loathe it.

Still I feel I can hear God’s sigh as I perform my own dances in depression or wrong thinking – very unbecoming self-stimulatory behaviors I might add – as he says, “all we are doing is making a change…” To him, we are changing the sheets. To me, we are turning my ontological framework inside out. Like Noah, I want to set that panic buzzer and each time I see a sign of change I want to ring the alarm. Unlike me, God doesn’t want to run away altogether – though he might want to have my medication adjusted.

So what am I to do on these days? With Noah, I patiently love his idiosyncrasies. I made one of his favorite dinners and indulged him as much as I could. I know that tonight he will roll over on a pillowcase pungent with extra Downey Fabric Softener and say he likes the smell. I know that the change, no matter how staggering it has been to our day, was both necessary and worth it in the end.

With me, God smiles and does the same thing. As I lay my head down on my newly laundered pillowcase tonight he will whisper: “I am he who is able to do immeasurably more than all you ask or imagine…no eye has seen, what no ear has heard, and what no human mind has conceived — the things I have prepared for you because you love me…nothing is impossible with me.” Maybe I will dream and then know that the changes, no matter how staggering have been worth it in the end.

Saturday, December 11, 2010

The Autism Gospel - On Stealing Jesus

Living day to day on the “autism spectrum” has changed our life. We have been forced to view each encounter and situation through a neurological lens. Questions like, “How will this event smell or sound?” and “How will his eyes process this event?” and “What hidden senses will be triggered by this event?”, are paramount to our success. And when I say event, I mean something as simple as a trip to the grocery store. Life is complicated.

So when we were on the way home from church last Sunday and I received a call notifying me that our home had been burglarized, we entered a trauma mode. Knowing where all of his possessions are is very important to Noah. Realizing that someone had 1). Entered our home in violence and 2). Possibly moved or touched some of his possessions or 3). Possibly stolen some of his possessions was traumatic. When Noah encounters a trauma his brain responds by shutting off what it perceives as non-essential functioning until the shock wears off. In most cases, Noah becomes a “selective mute”. While this once lasted for hours or days, now I can usually bring him around within a 60-minute period. All the way home I explained that in these exact terms; “It’s alright because there is nothing they could take that we can’t replace. It is alright because the dogs are safe. It is alright because the police are there. It is going to be alright...”

He was eerily quiet as we got out of the car and proceeded into our home. At once, he began rummaging through his room in order to mentally catalog his prized possessions. Suddenly, he came running out into the living room. He made a beeline for the antique hutch where, just the night before, he had arranged our Nativity. Out of the corner of my eye, I saw him snatch something and hold it tightly to his face. Then he ran to me and spoke the first words he had said since our trauma had begun: “Mom, it’s going to be alright because, look, they didn’t take our Jesus!” Then he unwrapped his small fingers from around a manger with Baby Jesus inside. “They didn’t take our Jesus, Mom! It’s going to be alright!”

I must confess, to this point I had been inventorying my biggest losses - my laptop and our 36-inch television. I had already thought, “The next lap top I get goes with me everywhere - this just tears it!” Suddenly time stood still for the police and other persons in the room as we realized there are some things that cannot be stolen. Later that evening Noah was headed out the door with his father to go and see Santa. He stopped at the threshold and turned to ask, “Hey Mom, I know everything is alright but I can I take Baby Jesus with me? I just want to hold him extra close for a while.”

While I had planned to chain my new laptop to my person, Noah was more concerned about holding Jesus more tightly. More than just a preoccupation with the arrangement of the Nativity, Noah saw the need to carry a part of it with him. I believe that, not only does Noah see his world Christologically, but also as a part of a bigger story. His responses to what others view as crisis and hardship consistently stun me into silence. It’s not unusual for the autistic individual to maintain a different and fixed perspective on circumstances. For my son, this happens to include the idea that most situations are not about him. Maybe it is because he has been so trained to be continuously aware of his environment and his response to them. Has this taken him out of the center of his universe and somehow placed him on the outside looking in? I don’t know the answer and probably never will. In any case, it is clear that Noah knows his story is part of a bigger narrative.

Stanley Grentz maintained that knowing our place as a part God’s kingdom in relationship to the narrative of scripture is key to our theology. He writes, “Narrative thinkers reminds us that we must view theology in terms of its relationship to the story of God’s action in history.” (Theology for the Community of God) Being a thinker that is able to view their part in any circumstance as a smaller part of a greater work changes their entire perspective. Furthermore, “….the revealed truth of God, which comes to us fundamentally in the narrative of God’s actions in the world, forms the ‘basic grammar’ that creates Christian identity…Rather than merely being a product of our experience, as certain strands of liberalism tend to argue, in an important sense this truth of God, this retold narrative, creates our experience.”

It is an identity crisis of sorts I suppose. Who are we? Why are we here? What is our purpose? Does God have a plan for my life? What does the Bible mean to me? Can all of those stories mean something today? How can I draw meaning from this book? All of these questions function in the same way. They ask “Who am I in the bigger story of the world?”

When I was in children’s ministry I had a phrase I said so often that the kids could mimic me with lethal accuracy. When I’d pick up my Bible I’d begin by saying, “This is God’s Book, the Bible…” Then they’d join in and finish the line: “and every word in it is true. It is one big story from beginning to end about how God is crazy in love with us!” More than just a collection of stories on par with Hans Christian Anderson, these stories are about us. They are the beginning of a narrative of which we are a part. When we see our lives as a continuation of God’s work since the creation of time, we should have an identity crisis. Grentz wrote, “The biblical narrative forms the foundation for a conceptual framework by means of which we view ourselves and our experience of the world.” No longer can we experience relationships, hardship, joy, adversity, hope or suffering without realigning our focus.

For some reason, this is Noah’s primary perspective. He is centered by the concept that he is a minor character in a larger drama that unfolds throughout time. In this instance, it manifested itself in a tight-fisted clinging to the manger. By wrapping his heart so fixedly around Christ, a violent invasion seemed nothing more than an affirmation of God’s story.

So for everyone who is wondering how we are making it - me and Noah and doing okay! After all we know our story. And they can’t steal our Jesus.