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.

Sunday, November 28, 2010

The Autism Gospel - Hope for Misfit Toys

I’ve been doing “research” for a message I’m giving next month. It’s a holiday gathering so the theme is preset, and I’ve got a pretty good idea where I’m going with it but I still like to research thoroughly. In doing my research, Noah and I have been watching some of the classic holiday movies. Watching a movie with Noah can be a strenuous experience. You have to be prepared for a lot of stopping and rewinding so that he can memorize a line in order to quote it perfectly 2 months later. As far as Noah is concerned, on the 8th day God made TiVo.

We were watching Rudolph the Red Nosed Reindeer. As we began Noah had several comments to make about how the characters looked, or how much he loves Christmas and how excited he is that “its almost here”. But his comments about Rudolph gave me cause to muse. It wasn’t very far into the plot before Noah grabbed the remote and, instead of rewinding, paused the dvd and said, “Now that is my favorite character – Hermie the Elf.”

I replied, “What do you like about Hermie so much?” Noah answered, “Well, we both have kind of yellow hair and also, Hermie is happy and sad at the same time.” When I asked how it is possible to be happy and sad at the same time, Noah said, “Well, you see Mom, he is a misfit. He is happy because he wants to be a dentist, but sad because no one understands him. So he is happy and sad at the same time.” Not passing up on a “Noah moment” I asked, “Are you happy and sad at the same time?” Noah answered, “Yes I am, it just depends on how I open my eyes.” While I pondered the weirdness of that statement, he began the video again.

Soon, Rudolph and Hermie have teamed up and run away in an effort to “be independent together”. They jump on an iceberg and head out for points unknown and arrive at The Island of Misfit Toys. At this point, Noah stops the video again and says, “Mom pay attention, this is the important part.” (At this point, I also grabbed my laptop.) They are greeted first by the sentry who appears to be a Jack-in-the-Box, but informs them that he is actually a Charlie-in-the-Box. This is why he is a misfit - because, “No child wants to play with a Charlie-in-the-Box”. Soon many other toys that have peculiar traits greet them. “How would you like to be a spotted elephant, or a Choo-Choo with square wheels on its caboose, or a bird that can’t fly but swims?” they are asked by the toys. When Hermie and Rudolph inquire how they got to the island they answer that the king of the island, King Moonraiser, searches for toys that no one wants and brings them to live on the island until someone wants them. Noah turns to me and says, “See, the king has open eyes.”

Now its quite possible that Noah was just discussing the finer points of 1964 made for tv animation, but somehow I don’t think so. You see, it’s a story of Hope. Advent is a season of preparation for the coming of Christ and a part of that larger story is Hope. In fact, it is woven all the way through scripture. In this story, the toys on the island have cause for Hope because they have a king that sought them out when no one else wanted them. And more than that, he provides for them a safe place of respite until they are wanted again. Please don’t miss the point – the king searched for them. This is the best part of the Hope: because the king had ‘open eyes’ no toy – no matter how big a misfit – went unredeemed. All toys are of value to the King, no matter how broken.

Noah changed the direction of my research. He indicated we can be happy or sad about who we are, it just depends on how we “open” our eyes. I rolled that over again and again in my brain all evening. I finally gave up around 4am and grabbed my Bible and began reading. Here are a few passages I was led to:

For the eyes of the Lord range throughout the earth to strengthen those whose hearts are fully committed to him. 2 Chronicles 16:9

I praise God for the Hope I can find because I have a King that came looking for me. Unwilling to allow me to remain a misplaced, misfit – he is redeeming the parts of me that he can work with and discarding the parts that he can’t. I’ve got Hope.

Let us fix our eyes on Jesus, the author and perfecter of our faith, who for the joy set before him endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Hebrews 12:2

I thank God for the Hope of the season that comes in the form of a source on which to fix my eyes. I’m a misfit, but he isn’t done with me yet. I am actually beginning to suspect that we misfits might be his favorites. Maybe it’s easier to show us how to direct our gaze. After all, it’s all in how we choose to open or focus our eyes. I’ve got Hope.

So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal. 2 Cor. 4:18

I thank God for embracing the misfits and then using us in a wonderful way to show his glory. We have a marvelous Hope because we open our eyes to the eternal and not only the temporal. I’ve got Hope.

To all the misfit toys out there, Noah says there is Hope for us yet…it just depends on how we open our eyes.

Saturday, November 20, 2010

The Autism Gospel – Flapping Like God

Another trip to the Lawrenceville Food Co-Op today. Noah was up late so I was afraid I’d have trouble blasting him out of bed, but he sprang right to life because, in his words: “Okay Mom, let’s put a wiggle in it – we can’t be late for the food delivery.” (I’m learning that I dearly hate hearing my voice echoed in his. I must choose my phrases more wisely…)

I don’t know how much baby food and toilet paper we delivered, but it filled my mini-van to the brim. So much so that Noah rode with Mr. Mike in his truck because there was no place for him to sit in the van. When we arrived at the co-op, Noah began to work himself into a frenzy. As he ran, he flapped his way across the parking lot and I cringed. Honestly, I confess that the hand flapping is one of the behaviors I could do without. Try as I might, I just can’t find a therapeutic substitute. He generally does it only when he is keyed up. When he gets excited about something or over-stimulated by lights or noise, it runs down his arms and they start flapping in rhythm. I admit that there are times when I see this small sign of our neuro-diversity and become disheartened. I can vividly remember feeling beaten black and blue from the inside out during pregnancy due to, what I described to everyone as my baby “flapping like a bird”. (See #3 under the criterion listed below)

DSM-IV Autism Criteria

Section C: restricted repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least two of the following:

1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus

2. apparently inflexible adherence to specific, nonfunctional routines or rituals

3. stereotyped and repetitive motor mannerisms (e.g hand or finger flapping or twisting, or complex whole-body movements)

4. persistent preoccupation with parts of objects

I even joked that everyone was going to be surprised when he was born with wings like a bat. In uterus, he responded this way mainly to music. Piano and organ at church or Billy Joel in the grocery store – it never failed. Directing the children’s musical 9 months pregnant was downright painful, but the kids liked watching my shirt move during the more lively songs. Flapping has always been a part of who we are. But I’d hoped by the time he was ten years old, he’d stop out of fear of how others might perceive him. But that’s not the way it works. Flapping for him is as part of his behavioral pattern as sweating when you are nervous or hot – it’s not something he can control. I’ve tried just to accept it as a part of who he is, but no mother wants to see people stare across a room, store or parking lot at her son who is having a neurological overload he can’t help.

But the truth is, if Noah ever flaps his way toward you consider it a huge compliment. It means he is delighted to see you. Most of us have found ways to restrain our elation into socially accepted mannerisms. We might clasp our hands or smile. Your eyes brim with tears of joy or you might even give a spontaneous hug. But not us – we flap and “ooo-ooooo-ooo”. I like to say “we flap and ‘ooo-ooo’ and hang around with those that do”. There is just no containing Noah’s joy. So it runs down his arms in flaps and off his tongue in “ooo-ooo”s. I know it makes people uncomfortable, but if they knew what a tribute it was to his love for them, I think they’d see it differently.

So between each trip from the loading dock back to the van for another load, he flew with flaps and “ooo-ooo”s. Armload after armload, back and forth, he carried bag after bag. Then I heard him mumbling as he carried certain distinct packages “man with green shirt brought this” or “lady in red sweater gave this”. It was then that I realized that Noah wasn’t only seeing the small step of delivering the food – Noah sees the entire project from beginning to end. In his mind, he could see each member of the church as they entered North River with their contribution. Then he pictured it in the pile. From there Noah saw it going in the van and then onto the loading dock. Afterward, Noah could already see it pulled from a shelf into the bag of a family. It took me all day to process this simple, yet profound point. According to part 4 of section C, Noah shouldn’t really be focused on the whole, but rather a small part of this project. There is no provision within his diagnosis for Noah to cognitively encompass the entire process of the mission – from grocery store to the arms of those in desperate need. But not only does Noah seem to visualize the entire process at one time, he also seems to connect the specific people involved at various steps of the way.

Case in point, after we were through unloading he asked Mr. Mike to take him to see Linda, the resident saint-in-charge of this ministry. He had to put the last piece in place. As we wound our way through the church that houses the co-op, I saw Noah glance at the weary faces seated in pews with their children, waiting to be called for an opportunity to obtain food for their families. Immediately, his hands began rapidly flapping. It was then that I realized – oh, he is seeing the end now! Mike got Linda’s attention and Noah extended a flapping hand in her direction. Her face broke into a smile and, God bless her, she extended a flapping hand back in his direction. Linda also, standing in the face of the end result of grace, needed to flap in response. Images began pouring into my mind: the Father of the Prodigal running wildly down the road toward his wayward son; Angels in heaven winging ecstatically at the confession of a lost soul; and maybe even God himself wild with enthusiasm and elated with his Beloved Son descending as a dove at Jesus’ baptism. All flapping, all enraptured with the end result of grace. Maybe God flaps for us when we can see the whole picture and become lost in him alone, basking in his grace.

In the car I asked Noah how he enjoyed his morning. His response was typically profound. He said: It makes me feel like Christmas inside. I couldn’t resist and asked how so. This was Noah’s answer:

On Christmas God gave Jesus. Food is the Jesus we can give. I think being like God is the Spirit of Christmas Mom. We can be like God and it feels like Christmas inside.

I sense Noah feels a part of a larger redemptive grace. He knows he can’t give these people a Messiah – he can’t send them a Jesus. But “the Jesus we can give” is food. Therefore, just as God gave and made provision for mankind, Noah feels he can mirror that behavior in giving. In this way, Noah feels he is being like God. He feels Christmas inside.

And being like God makes him flap. And suddenly, that is just fine with me.

Tuesday, November 2, 2010

Following Small Steps

Upon the request of a few friends, I'm posting a letter I wrote after hearing about my minister's visit to Grandparent's Day at his grand-daughter's school. They read a poem about "Why I Love My Grandparents". One stanza read: I love my grand-parents because their "steps are small". Here is what I wrote...

Your status and story about the poem which declared love for grandparents because their “steps are small like mine” was beautiful to me. I had the privilege of being loved very much by my grandmother. If you’ll allow it, I’d like to think more about it.

Her life had been hard. She was the youngest of three, born on the cusp of The Great Depression to a quiet woman of faith and an alcoholic. She saw a brother go away to war and miraculously welcomed him home again. She didn’t go to school beyond the 8th grade except for cosmetology school, which helped her begin her career at the age of 18. She “did hair” exclusively in the city of East Point, Georgia for over 50 years.

She married young and was a divorced, single-mother in the 1950s. While her divorce carried with it the all-important distinction of “biblical grounds”, she was still marginalized in the South of the 1950s. After her divorce, she moved back home with her parents. Her father died shortly after her move home and it would only be after another brief respite that her mother would begin to show the signs of early onset Alzheimer’s. I remember the story of how she checked my great-grandmother into a nursing facility when her behaviors became overwhelming. She said that once the sun went down she knew she’d made a mistake and she cried all night. That was the only night my great-grandmother, after whom I am named, spent away from the home she had made for her children.

My grandmother married again when my mother was a teenager. Knowing the story as an adult, I believe she probably married out of loneliness and fear more than anything else. They were only married a short while before he was diagnosed with cancer and died. The majority of her life was spent in a small, yellow shotgun house on the corner of Semmes Street and Westwood Avenue. Most of that life was lived in the company of her beloved dogs, all of whom are buried in the backyard. Most of this life was also lived alone.

Looking back now, I don’t know how she did all of this alone except for sheer strength of will. The yard blossomed with flowers and shrubs that came to life under those same fingers that rolled many a permanent wave. The home of her childhood became her own home. I can recall her saying that she loved to travel and see the sights of the world – as long as she was at Semmes Street when the street lights came on. Like her mother before her, she loved the house she had made into a home.

Before I paint too rosy a picture of my predecessor, let me say that she was quite a character. Perhaps a local minister characterized her best during the days as she lingered before death when he said, “Well, I imagine God’s trying to decide what to do with her: heaven won’t have her and hell is afraid she’ll take over.” Known for speaking her mind, she was a woman feared by many. Her personal credo was to let people know exactly what you were thinking because it would either 1). Endear them to you or 2). Cull them right out of your life, for which she said you’d always be better off in the end. She was tall and intimidating and of strong persona. She didn’t like too many people and only had a handful of friends. But she loved me fiercely.

I christened her “J.J.”, a name of uncertain origin. When my mother corrected me, her statement was: she can call me anything she likes – as long as she calls me. I think it was in these early moments that her steps began to shorten. While she had little use for children, or people in general for that matter, she saw something of value in the girl that bore her mother’s name. I can say, without question, that the women in my family have been the greatest female influences in my life.

With her patient insistence, I learned to walk on the same wooden floors that my grandmother did. Before I was 3 years of age, I had regular nights of the week when her home was also mine. In her kitchen I learned to cook. In her yard, I learned to garden. This woman, feared by many and hardened by circumstance, consciously shortened her steps so that I might walk along her side. If she ever tired of my presence, I never knew it. By the age of 4, I knew her work schedule and would call before her last appointment of the week to ask when she was coming to get me and bring me “home”. I know that, to some degree, this hurt my mother. The only reasoning I can give is that J.J.’s steps were shorter and easier to follow. Now my mother, in turn shortens her steps for her own grandchildren.

Short steps allow for little ones to keep up. Adults are often so busy that they stride through life purposefully with long strides and much to accomplish. When I came into my grandmother’s life, I think her steps shortened because the only thing she felt she had to accomplish was to love me deeply and make sure I knew it. Those steps that often left people quaking in their wake, were a safe place for me. Time was ours and it seemed unlimited. Because she was willing to take short steps and allow me to follow closely, I am the person I am today.

I’m still convinced that I am the child of some Jesus loving, academic gypsies and not my family because I am so different from any one of them – including my grandmother. Never a reader, she seemed to tolerate my quiet presence in the rocker beside the front door with my nose “stuck in a book”. While she had been raised “in the church” herself, she hadn’t the temperament for memorization of scripture her mother had desperately tried to instill in her. But I think she saw in me, the redemption of her ways. I have early memories of stories of my great-grandmother, the “first Vangie” and how she loved the Bible. She encouraged this love of knowledge and memorization and told everyone who would listen how gifted I was. I was even trained that my name came from the word evangelist and that I was to be one who would spread the Good News. It was in my name, and it would dictate my steps for the rest of my life. (Unfortunately, her Restoration Movement view of Church also led her to say many times, “it is just such a shame you weren’t a boy….the things you could have done for the kingdom of God!”) Nevertheless, my love of learning was encouraged in her home. While those were not the steps she chose for herself, she could make her steps short enough to allow me my own way, even though it was different from hers. It seems that shortening her steps also allowed me to out pace her at times without resentment.

My favorite memories are of riding with her through downtown Atlanta. As winter approached, she always found extra money to go to Kmart and purchase fleece blankets. On the coldest of nights, she would come over shortly before dinner to announce that she was “taking me to Shoney’s” to celebrate some accomplishment – usually a good grade. Now what I knew, which my parents did NOT, was that this was actually code for something altogether different. Upon leaving my parent’s home on these cold winter evenings, we would hit a drive thru and then head into downtown Atlanta. She always took the back roads anywhere she went. Her justification was that she had learned to drive without the interstate and didn’t need it to get where she was going. These paths often took us into the roughest areas of town, which is just what she had in mind. We’d drive around for an hour or so and each time she saw someone down on their luck without a jacket she’ d say, “Vangie, hop out and give them a blanket.” So an eight year old, little white girl from the suburbs would jump out and deliver a blanket to a stranger with a smile and without judgment or fear. I think she knew this was the greater gift than the blanket itself.

Short steps taught me that there was always someone in worse shape than you. Short steps trained me that it was not in my heritage to turn anyone away who came to the door asking for food. My great-grandmother had given out food in this house to anyone in need, my grandmother would give the last of her leftovers to anyone who asked, and so would I. Short steps taught me the pace of the Kingdom of God here on earth, as such as that we gave to those in need without concern for our own well-being. We were God’s sparrows and he’d care for us. Only short steps can teach these truths because long strides in this direction create fear and uncertainty. But somehow, walking short steps in the ways of the Kingdom made it easier to learn this kind of faith. How thankful I am for those short steps.

As her steps did, literally, begin to shorten she would often ask, “Vangie, are you going to take care of Semmes Street when I’m gone?” I would dutifully reply “yes” even though I could not fathom a world without her in it. Even as I decorated her home for what I knew would be her last Christmas in 1997, I could not imagine this place without her presence. She died in February and through the spring as my mother cleaned out her house, I was unable to enter my safe haven. In a time of transition myself, I was suddenly without a place to live. To my mother’s credit, it made complete sense to her that I would move to Semmes Street. I recoiled at the idea because of the pain her absence left in that place. But after a few months, it became clear that my steps would lead me to Semmes Street once again.

It was the end of May when I moved in and my heart lurched as I moved my things into her home. I could hear her each time I went out the back door say, “Vangie, don’t slam the screen door!” I could see her at the sink each morning when I rose to make coffee. And, worst of all, I could smell her in each room. I remember distinctly the day I knew I could make my own steps in this place. The second week of every June, her gardenias dutifully bloom. So on a beautiful Georgia June morning, I awoke to the smell of 8 gardenia bushes –all as big as Volkswagons – blooming in unison. I could feel her say, “Vangie, take care of Semmes Street. I’m still here.” And it was in that time that I learned that taking all of those short steps had led me to a place where I know who I am. That is the best way I can describe how I feel here in this place so many women in my family have called home. Walking in those same short steps remind me, daily, that I am Evangeline – a bearer of Good News about this life. Treading the short steps she taught me to take is helping me train my son in them as well.

Knowing the ways of the kingdom of this world, anything small is also seemingly insignificant. The tiny and minute are generally marginalized in favor of “the bigger the better”. In our super-sized worldview, small steps seem like a waste of time. But I believe that the small steps are of greater value than the greatest strides. At least I know that to be true in my own life. So I pray that I, too, will leave not great marks on this world but small steps in which another can imagine walking also. For I have found that it is the small steps which lead me on the most beautiful path.

Wednesday, October 27, 2010

The Autism Gospel - On Being "Good" & "Sorry"

Christmas Eve has always been almost as hallowed as Christmas morning. It has been our family’s custom to celebrate the advent of Christ this night at a Candlelight Communion Service. It is the moment of the entire holiday season that I treasure the most. Amidst the insanity created around being thankful and the celebration of Jesus’ birth, these few moments are especially sacred.

Well, they were sacred until autism came to live in my house. Because this is a family event, no one expects complete silence – even during “Silent Night”. However, the fits and challenges of living on “the spectrum” dropped like a bomb on our “O Little Town of Bethlehem”.

When first negotiating our event calendar after the diagnosis, I became practiced at carefully planning our sensory diet in order to participate in “real life” as much as possible. Even though it was necessary to forego many activities that “normal families” share, the Candlelight Service was non-negotiable. I even surmised that the low lighting would, in fact, contribute to our success since it eliminated a source of sensory input. That was before I learned about all the hidden senses and how this event would trigger them in bizarre ways.

As sacred an occasion as it was, as a staff member at the church, Christmas Eve was a work night for me. My portion of the service was limited to the reading of a passage of scripture, but this would still necessitate that I leave Noah’s side for a portion of the evening. However, I took extra precautions to insure our success. I planned for my family to sit in the balcony (closed to the rest of the public) so that we could be isolated. I took Noah through the event, by walking him – literally - through the Sanctuary and explaining everything that would happen. I planned for him to have his favorite quiet manipulatives to play with and something to chew on. Then I used one of the most time-honored tools a parent can use – motivation (I prefer this term over the vulgar “bribery”). I allowed him to pick one gift from under the tree and told him that if he could hold it together, he could open it in the car on the way home from church. His four year old eyes lit up and he was ready for the challenge.

Dressed in our best non-itchy clothes, we prepared for a contemplative evening. Noah was ready and excited. At this point in this development, many will remember his repetitive phrase was “I want to be a good boy.” Over and over and over again, I would hear “I want to be a good boy. I want to be a good boy.” And no matter how many times I reassured him that no matter what he did, he was a “good boy”, Noah would repeat his mantra. I still remember that as he sat down on the church pew and swung his little legs over the side he was chanting “I want to be a good boy”. I think it was just he way of psyching himself up for what he knew was coming, but it still cut at my heart to hear him expect so much from himself.

It was looking hopeful until the organist began playing. It was then that I met sheer terror in the eyes of my son. Quickly, I assessed that not only was the organ louder in the balcony, but that we could actually feel the vibrations in our body from here. It was as if the music was inside us and we had no control on the volume. But I was prepared – I reached into our bag and found the preemptive bag of Goldfish crackers I had brought along. He took the silicone sensory tubing we carried with us everywhere out of his mouth and happily replaced it with a cracker. Pieces of Goldfish fell out, however, as he murmured “I want to be a good boy.”

Then I noticed the slight smell that the candelabras were creating. I also noted that every other person in the room had on red and while it was beautiful, it was also a riot of color from our perspective. Noticing more and more pieces of this puzzle, I gently took Noah’s shoes off. I could already tell they were on his mind and that we would need to manage some of this stimulation soon. I went to read my passage and when I got back he was rolling around under the pew. Now, I didn’t really care as long as he was contented, but it was the rigorous flapping at his wrists that let me know this was just the calm before the storm.

As the music swelled, so did our potential to come completely off the chain. Three songs in, Noah was chewing on his candle. Honestly, I remember thinking: When I was unwrapping those candles were there any warnings about ingesting any part of them because if not, I don’t care if he eats the whole thing. I’ll spring for an extra candle at this point if this will just be over soon. It was during the devotional that I could sense we were not going to make it through this experience. I knew the timeline of the service and thought if I could just help him make it through a few more moments he would have something to be proud of. He could call himself a “good boy”. But I tried a moment too long.

I was able to cover his mouth with my hand before the wailing began. As he just about beat me black and blue with full armed flapping, I wrapped him in a bear hug and out the balcony doors we went. There is a small communion table in the balcony foyer with an oil painting of Jesus hanging over it. I rushed him to the table and sat him on it to try and comfort him eye to eye as best I could. I was in tears, not because of embarrassment or because we hadn’t been successful but because I knew what was coming: a litany of “I-want-to-be-a-good-boy” that would break my heart. Instead, when he got his breath he turned his tearful face to the wall behind him. Gazing up at that portrait I heard my little boy say, “I’m so sorry Jesus. I wanted to be good.”

Looking back, I am amazed that Noah had the capabilities then to internalize the feelings of an “abstract” authority figure. But in that moment, it burst a dam of emotions within me and I began to sob. With rare indulgence he allowed me to hold him and tell him over and over again, “Baby, Jesus is not mad at you.” He wasn’t afraid that he had disappointed me, but he knew this night was about something bigger than he and just wanted to be a part of it through obedience. He was hoping his goodness would allow him full participation in grace and favor. And when his goodness was not enough and he had reached the end of his personal resources, he was very, very sorry.

I have recently been in similar straights. I have had the need to sit at the feet of Jesus and say, “I’m so sorry. I don’t know how I got here, Lord, but I am so sorry.” I am feeling particularly in need of grace and favor. Much like my boy, I want do desperately to be good. I chase God with a relentless drive and determination that can be frustrating for those around me. My love and pursuit of the knowledge of God has ostracized me from more than one friend. My obsession with him makes me difficult to understand and synthesize the world around me on occasion. I’m not a lot of fun at parties. So how is it that someone who rushes after God so passionately can miss the mark so badly?

I am desperate to feel his arms tightly holding my flailing ones. I wish I could actually feel his loving restraint as he tells me the truth about who I am and how hard I strive and try and fail. I don’t know what he would say to me, but I wonder if he’d tell me the same thing I told Noah – “Baby, I am not mad at you.”

If you’ve ever been at the end of your personal resources because you haven’t been able to be good enough, maybe you understand what I am feeling. The good news is, even though I am working hard to convince myself of this now, Jesus is not mad at us. Our own goodness and personal resources were never going to be enough in the first place. There was no way we were getting through this experience without relying on him. All the chew toys and Goldfish (or those more things we adults use to comfort us in an attempt to adapt to our circumstances) were not going to make our goodness more effective. Sometimes, we just fail.

But we are a part of something much greater than ourselves and as such have resources available that extend beyond our own. Today I am going to try to rely on his goodness. I want to rest in his grace. I am striving not to be good enough on my own, but to trust in his favor and love. Trying to be “good” enough results in nothing but being “sorry”. When I operate under these conditions all I am is “good and sorry”.

Reflecting on Noah’s way of negotiating the ethical implications of his own personal failure has made me see myself through similar eyes. Once again, autism has given more than it has taken away.

Saturday, October 23, 2010

The Autism Gospel - A Hand and Foot

He was so excited that he laid out his clothes 3 days ago for this morning’s outing. That’s the thing about living on the spectrum – we like to plan in advance. Actually, we’re lucky today even happened because we almost didn’t get to do the big event. If it hadn’t been for the extra work of two precious men who choose to see beyond our restricted vocabulary and arm flapping, I’d probably be managing a major meltdown this morning due to “change of plans”. I hate it when we change our plans. It leaves me feeling like I’ve been hit by a bus.

The countdown started on Thursday night: “only two more sleeps (as in a night’s sleep in Noah language) until the best day ever”. Then on Friday morning: “I can’t wait until tomorrow. It’s gonna be the best time ever.” So with our favorite shirt, our most comfortable shoes and Winnie the Pooh we head out into our adventure.

Now some of you must be thinking that I took Noah to a carnival or fair. Surely, only something to rival Disney World could command this much planning and preparation? Maybe we went to see a movie at his favorite theatre and then stopped to carb load on the way home? Nope. Today we got to deliver food to the Lawrenceville Food Co-Op. Yep, that’s what all the excitement was about. Let me further explain…

As I cited in my last post, Noah has become obsessed about the food ministry at church. He “helps” take donations each Sunday morning by greeting church members ever so warmly at the door with “hey…where’s YOUR canned fruit?” (Mental Note: screen for autism among the greeters at your church…I’m just sayin’) Each week he helps stack and count the contributions. He has also been part of the decision making process for each week’s featured donation item. I imagine in some way this has helped him order his environment at church. But, oh, if only this perservation was restricted to the church building. In addition to shopping on Sunday afternoon – that’s right, the WORST time of the week to grocery shop and thereby, loose your anointing – for this week’s item, Noah has solicited donations from family members and friends. He just cannot understand why everyone has not caught on to this exciting phenomenon.

So this morning, we visited the Food Co-Op and delivered donations. One of those sweet men who’ve so kindly adopted Noah called the ministry ahead and told them about Noah. The director of the Co-Op was so happy to hear of his interest (that’s a mild way of putting it I think) that she made plans to give Noah a personal tour of the facility. My only prayer was that we would not make a bigger public spectacle of ourselves than we usually do – on a scale of 1 to 10 (10 being “wow, did you just see what they did”) we typically average out at a 7.

We couldn’t even get in the parking lot of this modest church in Lawrenceville. Mike had warned me that it would probably be crowded and noisy on a Saturday morning. Noah had actually asked me on the ride up, “So mom, what exactly will this be like?” It has probably only been in the last year and a half that I ever dare take Noah anyplace I have not scouted out previously. I would always have to report how it smelled, the noise level, and lighting conditions to him before we ventured anyplace new. Well, this morning I couldn’t do that so I answered, “Well, Buddy. I’ve got no idea.” His response was typical Noah: “Well, this will be something to remember then, huh Mom?” My first thought was, “dear God I hope not”.

After Noah helped Mike carry in about 10 bags of groceries (the heavy work was very good occupational therapy before the noise, sights and smells…thanks for that Lord – wouldn’t have though of it), Noah was greeted by the director. He couldn’t make eye contact, but offered her a very flappy hand shake. She was warm and wonderful and put Noah at ease immediately. It is obvious that she is practiced at (and has perhaps perfected) the art of restoring dignity to the broken. So she began to take Noah through the building. She explained the in-take process and when he loudly asked, “hey, who are these people?” she calmly explained that they were waiting to go back and get their food. She even took Noah through the offices there and showed him her filing system and explained how they manage helping so many people. He insisted, of course, checking the S file cabinet to see if we had a file. She was un-phased by his questions and requests. She introduced Noah to everyone as if he were a celebrity. Noah dutifully gave each volunteer the same view of the top of his head, and flappy hand shake. No one seemed to think anything of it. At one point I heard her gently explaining to Noah that giving is a way we can be “the hands and feet of Jesus for people who need his help”.

Noah said very little, but was his usual stealthily observant self. I allowed him to bring the camera so that he could take pictures. I thought maybe it would quench some of his interest, truth be told. When we got back to the rows of food, I could see him mentally inventorying the shelves. I allowed him the camera and he began snapping away. I was dismayed to find him reading the labels on the empty shelves. Sure enough, later in the car he was able to tell me everything they were out of. His biggest excitement was seeing a table set aside for baby food and formula.

I waited until the ride home to ask Noah what he thought. He typically speaks better when we are in the car and I’m driving – always has. I think it is the combination of not needing to process my facial expressions and read my social cues during a conversation and the stimulation from a moving vehicle that helps him communicate better in this way. Here is what Noah said:

“I feel proud to be a hand and foot. It was a great day because Jesus helped people today. Babies won’t be hungry now. Oh, and mom…they are out of toilet paper.”

Mike had given him a list of the Co-Op’s Top Ten needs. Noah read them silently until we reached the interstate. Somehow I don’t think today quenched Noah’s desire and passion for the food ministry. Instead, we may have just created an all hands and feet monster that might go through your pantry should we stop by your home to see if you have any of the featured donation of the week.

Everybody lock up your toilet paper.

Sunday, October 3, 2010

The Autism Gospel of Green Beans & Samaritans

“Mom, don’t have hurt feelings, it’s just a growing up thing to do.”

This is how Noah started a heart-to-heart conversation with me about a month ago. I was terrified as to what would follow this declaration of independence, but encouraged him to continue. Not a fan of “small talk”, Noah got straight to the point. “Mom, I want to put myself to bed at night.” I tried not to emotionally respond to this newly found sense of autonomy but my heart cried out, “No! Not the bedtime routine!” (Sometimes I wonder who the autistic person around here is…maybe it’s contagious after all.) So without any emotional affect at all, I asked what this might entail. Just which parts of our routine was I to forego in the spirit of pre-adolescent development? To my surprise, his idea of putting himself to bed meant that Noah would say his prayers himself.

Now I should say that when we first received our diagnosis one of the most bone chilling prospects of 299.0 was the “lack of social or emotional reciprocity”. What was that going to mean for Noah? Would he be capable of a conscious or was he destined to become a serial killer? Many nights would find me bleary eyed cruising the internet for adaptive behavioral methods that might be the cure for our curse. My biggest fear was what this would mean for Noah’s spiritual life. Without emotional reciprocity, could he ever respond to God as his Savior and forever friend? And he couldn’t even talk to me or conceive of me as a person when I was right in front of him. Could Noah ever conceive of a God who loved him enough to send his son to die for him? Would he be able to ever communicate with God?

To say these thoughts plagued me daily in our early years is the epitome understatement. I methodically tried different approaches to break through to a place where I could access Noah’s soul. My only solution to the prayer problem was to make a small photo album with pictures of those for whom we could pray. Using photos from Christmas cards, I used this book each night to hopefully convey to Noah that praying included talking to God about other people. While it has been a long time since I’ve needed to use the book to break through to Noah, I have still often wondered at night: Does he even listen to the words I pray or is this just part of the routine to him? Like the parent of any “normal child”, I have wondered if my child would internalize his faith.

While I am sometimes tempted to feel that autism has robbed me of certain liberties as a parent, I am constantly reminded that it has given me far more than it ever took away. While I don’t even pretend to have this disorder “by the tail”, I can say that I’ve found there is much more happening than often appears on the surface with an autistic individual. Whereas before I might have deduced from certain behaviors that my son lacked emotional reciprocity, I now see that I believe Noah has been gifted with heightened senses. I can only speak for “our case”, but I know that Noah feels and sees things that elude those unfortunate enough to be normal. Here is how I know…

Our church supports a local food co-op to provide for families in need. We’ve participated before by bringing in assorted canned goods and allowing Noah to place them in the grocery cart located in the foyer. However, last Sunday’s emphasis was on green beans. Somehow, Noah really caught on to this specific idea. All week long he inundated me with reminders that we had to get green beans for the “hungry people”. And when I say that Noah reminded me, I mean SEVERAL times a day because when we focus on something we REALLY focus on it.

So on Saturday when we did our grocery shopping I patiently waited while Noah picked out just the right can of green beans – which turned out to be a 4-pack but this is for the Kingdom right? He placed them in the buggy and checked on them several times as we continued to shop. When we got to the check out, Noah dug them out from under the rest of the groceries so that they would be checked out first. I grimaced as his arms flapped when they “beeped” over the scanner. Then I promptly forgot about the green beans. That “to do” had been checked off my mental list.

Last Saturday evening, I stood at the door listening to Noah’s prayers. Even though it’s a “growing up thing to do” Noah still prays aloud with his hands clasped to his chest. I heard him say, “And dear God, please don’t let me forget the green beans! Don’t’ let me forget the hungry people.” My mouth went dry. I swear that I believe the salvia was immediately redirected into tears because I instantly wept.

Dear Lord, please don’t let me forget the green beans and the hungry people. When was the last time I prayed with the sincere spirit to remember and not forget?

It was then that I remembered Noah has also been fixated on the story of The Good Samaritan – or as he calls it “The Story of the Guy on the Road”. I find it interesting that Noah doesn’t identify with the hero, but with the wounded. I’ve acted out this story dozens of times in Sunday School lessons. No one really wants to be “the guy on the road”. It’s the Samaritan that is the hero. We even make a big deal about how marginalized the people of Samaria were and how extraordinary it was for Jesus to choose this unlikely hero. But Noah never seems to get past the image of the wounded man. It seems Noah has a heightened awareness for those in pain and need. I don’t have to wonder why.

I can still see Noah laying under the table in most of the Sunday School classes he attended as the rest of the class sat obediently around the story circle. My wounded little boy would stay on the fringes of his own society, paralyzed by his own brain for many years. I wonder if when Noah sees the picture of the man prostrate on the road, some part of him doesn’t transport his mind’s eye to the perspective of laying on the ground himself. I believe that even though we could not see it at the time, Noah was desperate for someone to come along and be his Samaritan. And many teachers did just that. In this way, he identifies with the wounded and passed by in a way most of us cannot.

What I find difficult to grasp is Noah’s desperate plea not to forget those in pain. Having experienced so much pain himself, why would he want to remember more? Well for Noah, I guess he can still see from the perspective on someone on the road. And contrary to all logic, Noah prays to remember and not forget. He prays not to forget the pain and suffering with which he identifies. In his own way, he is willing to relive that scenario in his memory in order to keep his perspective. Most of us spend our energies avoiding personal suffering or, at the very least, trying to put it behind us so that we can “go on”. But Noah asks to remember.

I hope that one day, I can grow to a place where I can ask God to help me remember my pain and not forget it in order to benefit someone along the road. Until then, I will remain inspired by green beans and Samaritans.

Today is “Tuna Fish Sunday”. Our cans are packed and in front of the door so that we’ll have to trip over them to forget. But I have a feeling that Noah won’t let me forget...

Sunday, September 12, 2010

The Autism Gospel - The Barefoot Confession

Today I baptized one of the finest human beings I’ve ever known. I’ve written about my Gillian in previous blogs. She is a child affected by autism and it’s challenges. I wrote about how her first word was Jesus and all she had taught me about that “Name above all Names”. Today, Gillian taught me another lesson about the Kingdom of God.

She has displayed a deep love of Jesus Christ for many years now. Despite her attention deficiency and sensory issues, I could always depend on Gillian’s piercing blue eyes to be glued to my face whenever I taught. Those eyes always caught me off guard. I am accustomed to the autistic child who avoids eye contact, but this was never the case with Gillian. At one time, I confess, I considered her stare blank and vacant. It seemed her gaze just rested on you without intention. What I came to discover was that, while her gaze was without “intention” it was not vacant or without cognition. I say it was without intention because I learned that when Gillian gave you her interest, her eyes would reflect that she took you at face value. Perhaps because of her social difficulties, she didn’t expect anything from me during our interactions. The result of this was that Gillian was able to process and reflect on my words much more quickly than other children.

Perhaps my favorite Gillian story was from our unit on The Prophets. One of our first lessons highlighted the life and story of Isaiah. We presented the call of Isaiah in a tandem-story method that allowed me and another storyteller to narrate the story together at a pace that moved the excitement of the story in a direction that communicated the wonder of Isaiah’s encounter with God. We told about Isaiah’s vision of God complete with seraphs and the train of his robe that filled the throne room and everyone crying “Holy, holy, holy is the Lord God Almighty.” For many of the children this was the first time they’d heard this portion of scripture. I was especially concerned about the younger children and wondered if they would fully understand the significance of this passage.

Immediately after the lesson, I felt a tug on my pants and turned to see Gillian’s big blue eyes meeting my own. Her commentary on the lesson still rings in my mind. She said, “Miss Vangie, when you told me about Isaiah and those flying snakes and everybody crying ‘holy, holy’, I forgot my tights were itchy!” In other words, the passage had made her forget her momentary (but very real) physical and neurological discomfort. I told my co-teacher we’d never hit a home run like that again no matter how hard we tried.

Soon after this Gillian began to say, “Here I am Lord, send me!” in own special way as she began to discuss her desire to be baptized. Always cautious, her mother and I continued to dialog with Gillian but wanted to be sure she “understood” the significance of her decision. Looking back now, I could kick us both. I should have realized that Gillian’s response was exactly like that of the prophet. She was ready to have her life given over to someone who’d be with her always.

So a few weeks ago Gillian finally had enough and asked her mother, “Why do I have to wait?” Her mother hadn’t made her older sister wait. Gillian could see that she was being handled differently. She is generally at peace with being treated differently because she knows that she is different from her siblings. But on this issue, Gillian had had enough and stated in no uncertain terms that it was time for her to be immersed.

I’ve found that autistic children, perhaps all children really, tend to have what I call a “person”. This is usually someone to which they have developed a close attachment. Often, these bonds are formed as their “person” guides them through a difficult time or transition. I am humbled to say that I am “Gillian’s person”. I don’t say this to brag, but rather to put this covenant into words in order to make myself accountable to the responsibilities of being her person. So when the question was posed as to who would baptize Gillian, there was no question in her mind that I would perform this honor. I can’t describe what the process of immersing a child into Jesus Christ means to me. But to be chosen by Gillian to be both her “person” and the one to immerse her, all I can say is that it takes my breath away.

This morning I got an S.O.S. from the Children’s Ministry Intern letting me know that I might want to arrive at church early to reassure Gillian. This was shortly followed by a text from Gillian’s mother expressing the same idea. I was reassured to know that Gillian was expressing “normal” tendencies toward nervous anxiety and it confirmed for me that Gillian really did understand the magnitude of her decision. When I arrived early, I walked her into the Sanctuary to rehearse The Good Confession once again. It was here that Gillian reminded me of a critical Kingdom Principle.

As I knelt in front of her and explained that her current Children’s Minister would be taking her confession Gillian said, “I can say it, but can you hold me while I do it?” What she wanted was for me to kneel behind her with my hands around her waist as she spoke those precious words she holds so dear. She knew she believed them, she was ready to say them, but she wasn’t afraid to ask to be “held” as she carried out what she knew God wanted her to do. Oh that we all could be the Arms of The Kingdom for those in the family of God who need to be held as they carry out God’s work in their lives!

Instead, we try to bravely go at this life alone either hiding our inadequacies or pretending as if they don’t exist at all. I have a feeling many more of us are paralyzed by fear than admit it. We see our fear as a lack of faith and a limitation in righteousness. And because we can’t share our own fears and doubts, when others live out circumstances in their own lives that indicate struggles, we move quickly to forming an opinion about that person. Before we know it, we’ve judged them based on their fallen humanity without ever recognizing our own.

So how is it that these neurologically challenged children can embrace this kingdom ideal and we cannot? I think part of it lies in their so-called social deficit. It never occurred to Gillian that 1). It was unnatural to ask for support or 2). I would say “no”. I also believe her ability to take me at face value (or at my word) made it easier for her to diminish any suspicions she might have had to my response. She needed me and I am her “person”, so naturally, I would be there in her time of need.

As I knelt behind Gillian and felt her heart pounding through her little back, I was reminded of the morning’s New Testament scripture reading from Romans 8:

Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword?...No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.

I might also like to add: “Shall an imbalance in sensory input, or decreased social skills, or pervasive and repetitive behaviors or neurological deficit separate us? Will the way the world views those who just happen to hear the electricity run through the walls keep us from internalizing the message of the Kingdom? Will those whose speech cannot express the inner workings of their mind be left out of this kingdom?”

Conversely, I believe people like Gillian and Noah are here to show us the kingdom in it’s purest, most undiluted form. In their minds, if someone needs it and I have it to give – well, they can have it. When presented with the most difficult of Jesus’ teachings, these children have the ability to internalize and accept them. Why? It is kind of like Gillian’s piercing stare – they take Jesus at his word. There is no doubt that he is True. Jesus becomes their “person”. How many of us can say “Jesus is my person?”

And what a beautiful Jesus they internalize – full of compassion, love, mercy and grace! To them he is a Savior for the marginalized and forgotten. He is the Redeemer of Broken Toys. Fully recognizing their own brokenness, they not only welcome a humble Messiah, they are able to turn their hearts completely to him in obedience without fear or reservation.

I mentioned in my previous blog that Gillian prefers not to wear socks and shoes. She was intent on looking her best this morning - after all she was meeting her very forever friend today. However, her choice of shoes was already an issue by the end of Sunday School. As I was walking with her, I noticed she was having problems with her praxis and foot placement. When I asked her if she was alright she said, “Oh Miss Vangie, it’s my shoes. They are pretty but they are so tight. They hurt my feet and I can’t think.” My heart melted for this dear child who wanted so badly to have a “normal moment” just like everyone else, but was unable to function because of something most people can compartmentalize.

I told Gillian what we’ve said before: “If Jesus is in your heart he can’t see your shoes. Take them off Gilly…you stand on holy ground.” She replies, “Just like Moses and the bush that burned.” With tears I said, “Yes, baby girl. Your shoes don’t matter – your heart does.”

She gave her Good Confession barefooted. Today, that piece of ground was holier because of a wondrously created child of God who confessed him with volume and confidence without reservation, overcoming great odds beyond her control.

Holy ground indeed.

Saturday, August 28, 2010

The Autism Gospel - Fidelity

It was obvious that his teacher was concerned. I wasn’t sure just which of the symptoms with which Noah’s disability manifested itself was her primary concern on this particular day. She began by saying, “Noah is very attached to you.” As I couldn’t really dispute that statement I just smiled and waited for her to continue.

She went on to tell me that their first unit had been about Friendship. I am sure this was the most proactive way to begin teaching social skills to a group of 9 special needs preschool children. While 6 out of the 9 children in that room were non-verbal to some degree, it was clear some children in that room would never master oral communication. So it was logical that in order to attune them to an environment filled with other children with whom it was hoped they would become attached to, and thus, find a desire to communicate with, the school year would begin by drawing their attention to friendship.

They were teaching them to be aware of their surroundings and the people therein. As few of them were able to speak, they allowed the children to point to pictures of their peers they’d taken with a disposable camera when asked the unit objective: “Who is your best friend?” The problem seemed to be in the fact that Noah would not respond to the question. As the teacher pointed to each picture she’d say, “Noah, is Malcolm your friend?” Staring at the floor with a polite back and forth shake of his head, Noah would indicate “No.” Undaunted the teacher would ask, “Noah is James your friend?” The response would be the same. The teacher said she had almost given up hope when Noah began to touch the file folder in which she was taking her anecdotal records. She allowed him to open the folder and he thumbed through a book I’d made about Noah called “All About Me”.

Silently he flipped the pages filled with pictures of his grandparents, cousin, teachers from church and pets until he found the picture for which he was searching. Turning the book around he mumbled, “bes fwend” as he pointed to a picture of me. She tried to explain to Noah that I was his mother and not his friend, but Noah was insistent that I was his best friend. As she finished this story, she gestured to the small bulletin board at the front of the room labeled “Friends”. I saw that in the lower left hand corner, my picture had been wedged between the board and the trim. She explained this was the only way Noah would engage in the Circle Time associated with this unit. I was his best friend and he would acknowledge no other.

Much time has passed since I sat cramped in a little chair at that parent-teacher conference. I’ve read tons of information on social skills development for the autistic child. We’ve had the play dates in which I stood behind Noah like a puppeteer in order to engage him with other children. If you were to ask him now, Noah could give you a list of people he considers friends. He’ll tell you about Clara, Grady, Bobby, Luke and Mr. James. But as for a best friend, that position is still reserved for his mother and no other. Until recently, this has been a cause of concern for me. Then I began to try and see things from Noah’s perspective – most of the time it honestly makes more sense and is usually always closer to God’s perspective.

Noah considers me his best friend for one reason only – fidelity. Fidelity is defined as “the strict observance of promises and duties; loyalty; adherence to fact or detail”. Anyone having read the DSM-IV can recognize the similarity between this definition and the characteristics of a person with autism. The only difference is the diagnostic manual frames these behaviors in the negative, not the positive. There you’ll read: “encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus”. Now I fully appreciate the work and clinical expertise that went into the DSM-IV. Believe me when I say that I was thrilled when we were given the code “299” because it meant a pathway to assistance and help for us. But it also means that I must come to terms with how that diagnosis is going to frame my reference of Noah. And because I must add my faith in our Creator into the equation, I constant realigning my point of view on how much of Noah behaviors are correctable – or if I even desire them to be so. And the most bizarre twist of all is how in this road of “restricted patterns of interest” and exacting routine, a reciprocity has been born within me. Somehow, Noah has taught me faithfulness and fidelity.

Noah has found me faithful. We’ve been through a lot together. Sitting through hours of silence together drew us closer than all the hugs he couldn’t tolerate from me. Allowing myself to weep with him, showed Noah that I identified with his pain and uncertainty. Pushing Noah to achieve more has only always been possible if I would say to him, “I know you can do this and when you are finished I am going to say, ‘Noah I’m so proud of you.’” How these magic words have always been a comfort to him I don’t rightly understand.

But I think the part of me that Noah finds the most faithful is my willingness to allow him to be treasured without changing one thing about himself. Please don’t find me heroic in this - most of these moments are born out as I cover immense fear that Noah will be rejected for the person he is. Yet still, I want Noah to be able to be himself and be cherished for it. I believe it is this alone that has won me the place as Noah’s best friend.

It is really an interesting turn of events because his namesake is also one who “found favor in the eyes of the Lord”. I wanted my perfect little baby boy to be one with whom God would find favor because of his faithfulness. At the time, I could not have foreseen the hours of therapy and IEP struggles that would stretch out before me. I couldn’t have possibly known the road to faithfulness was paved with hours of learning as much as I could and then praying about what I’d learned. As it turns out, it has been Noah who has taught me to be faithful.

And he is, just as I had hoped, one of the most faithful friends you could have. Once you see Noah through a crisis and he can trust you, he is your friend for life. It doesn’t matter what you say to him, how you might forget or betray him, Noah will forever be faithful to a friend. He expects very little in friendship. For Noah, friendship is mostly about knowing a person is there and that he can trust them when in need. He requires very little, but gives much in return.

Just last night, Noah passed by the dining room table where I sat reading and stroked my hair as he said, “Here is my best friend.” What an unbelievable honor! I am awestruck each time he says it. Despite my faithfulness, I’ve done nothing to deserve the privilege of being known as “Noah’s Best Friend”. He so noble in character that, in comparison, I find myself humbled beyond knowing at his gestures of love and fidelity. He knows my every nuance. Don’t believe anyone who says the autistic child is incapable of emotional return. On the contrary, I think Noah has the capacity to feel more than the average human being. Without a word or a glance, Noah can read my feelings and no amount of faking it can fool him. His emotional telepathy is one of the most frightening and tremendous facets of his personality.

“Here is my best friend.” Those words still stubbornly lodge in my brain. But as I reflected this morning, I wondered if this is what we will experience when we see Jesus someday. I can imagine him surrounded by a crowd clamoring for his attention. Over someone’s head he sees me and stops his conversation and says, “Here she is, my friend!” How I long to be considered a friend of Jesus. And this side of heaven, I’ve found few that can show me what that looks like apart from Noah. I think his picture of fidelity and friendship have reshaped the way I believe Christ looks at me. And in addition to this, Noah has given me a great reward for the faithfulness he has guided me to develop – a place as his best friend. A greater honor, I could not ask.