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.

Tuesday, August 24, 2010

The Autism Gospel - Brokenness

When Noah was able to piece together sentences we really began to be able to acknowledge each other’s existence. People with babies that babble on time and have toddlers that love the sound of their own voice probably won’t appreciate what a revolution it was for us to be able to make noises to one another and communicate through them. But know that for Noah and I, these milestones marked the miraculous.

Even so, it was tough going because of Noah’s speech impediment. I joked that I could get a job at the UN as a translator because I seemed to be able to interpret anything. Add a vowel to a garbled grunt and I could tell you what it meant. For this reason, Noah rarely left my side. Attending a Special Needs Pre-K through Fulton County Schools opened Noah’s world and his vocabulary. Unfortunately, it also raised his frustration level as he tried to communicate without me at his side.

Upon daily carpool pick-up, I could sense at a glance how Noah’s day had progressed. Usually the day had proved so taxing emotionally that he often stared slack-jawed into space for several hours before showing signs of life again. It was at this time that I began to wonder how Noah was coping with his disability. Without functional language, the only way to gauge his emotions was through behavior. The signs were not good, but I remember the day Noah confirmed for me what I feared – he knew he was different.

He hadn’t turned four years old yet and was only attending the pre-K class part-time until, when at age four, he would become eligible for full day services. I picked him up after lunch, where he was being trained to eat in a crowded and noisy cafeteria in order to help integrate volume into his fractured nervous system. On this particular day, his teacher said, “Lunch was really hard for him today. He didn’t eat a bite. You should probably feed him again when you get him home.” So when we got home I tried to engage him in picking out something to eat but he just went into his room and shut the door. Since he’d never done this before, I went in to investigate and awoke to my nightmare.

Noah sat on the hardwood floor beside his bed with his arms wrapped around his knees rocking back and forth. When I called his name he didn’t respond in any way or stop the rocking. I was terrified. Not knowing what else to do, I sat on the far side of the room and waited even though I didn’t know what I was waiting for exactly. After around 20 minutes he began to slow the rocking and finally crawled over to a pile of toys. I, however, was too afraid to move. He picked up a cheap Happy Meal toy that had broken the day before and pushed it to my feet. I thought, “Okay, here we go again with him grunting and me explaining that I’ll try and fix this toy even though it is beyond repair.” But then Noah stunned me with the following statement, one I will never forget.

Without looking at me, his small voice said, “Bo-ken. Bo-ken Mama.” Before I could launch into my speech about trying to fix the irredeemable toy he continued. Suddenly, miserable eyes staring at me from a tear stained face met me. As he held the toy in one hand, he took his other hand and pointed to his head. He said, “I bo-ken too. I bo-ken here (pointing to his head).” I barely had time to process the tears on his face, the gesture to his head and his deduction that he was broken before he said: “Mama, you fix me. I bo-ken Mama, you fix me?” In that moment I knew that Noah fully realized his limitations and was heart broken because of them.

I’ve recently been made ever more aware of my own limitations, my own “brokenness”. While it comes as no great surprise to our Christian sensibilities that we are in a broken and fallen state, sometimes the daily management of our lives becomes overwhelming. Much like Paul “I know that good itself does not dwell in me, that is, in my sinful nature. For I have the desire to do what is good, but I cannot carry it out. For I do not do the good I want to do, but the evil I do not want to do—this I keep on doing.” It seems the harder I try, the more I fail. To say I fall short of perfection is the world’s greatest understatement – and those are usually my very best days. I spend much more time turning my own tear stained face to the heavens and asking God to fix my brokenness than imaginable. Truly, some days it is unbearable and I wonder what the Creator of the Universe sees in this severe mess of a human. I wonder if there is redemption for my brokenness.

You might be wondering what my response to Noah was that day. Shockingly, I didn’t cry in despair, or tell him he was fine just the way he was. For some reason, that moment in his bedroom floor served as a catalyst in my life. I was scared beyond recognition. The fact that Noah had observed enough of the world to find himself insufficient terrified me. He was defeated and rejected – at 3 years old. I had few answers and little hope in that moment. But something that had lain dormant inside me began to slowly and powerfully rise. It was as if a sleeping beast had suddenly been awakened in my heart as I heard my son ask me to “fix him”. And with strong voice and complete assurance I said, “Yes Noah. I will find a way to fix you.” I believed it too.

I’ve learned a lot from Noah, but one of the foremost lessons has been how to manage brokenness and rejection. As I am continually reminded by this violent world we live in, I am insignificant and powerless. To gain power is to survive. To wield intellect and influence is essential to life. I am told that I must fight my way to the top, to prove my merit and justify my existence as worthwhile. And to be honest with you, it just can’t be done. I just can’t be everything that every person desires me to be. I am without superior intellect or skills (even though some have found my wit especially biting). I don’t know how to do a lot of things. And like the apostle Paul, I fail in my moment to moment attempts to allow the Holy Spirit to guide me. Instead, I listen to the Voices of this fallen, decrepit world tell me that once again, it’s my Fault. And I fail again to meet the standard. I am broken. And I am without redemption or hope, salvation or rescue, joy or peace. It is at these times that I remember Noah’s misery as he wondered if he could be fixed.

For anyone who might be broken too, I have reassuring news. You’ve been fixed.

I’ve learned that more than countless hours of speech therapy, occupational therapy or early intervention the best medicine for Noah is unconditional love. I can only say I know this because my Creator uses the same therapy to heal my brokenness. The Bible is the story of a relentless pursuit of humanity by God because of his unqualified love for us. We have been loved with a fierce love. Beginning with the covenant relationships of The Patriarchs down through the time of the Prophets, God sang a song of unrequited love for his creation. And at the apex of his opus, the cry of a baby boy born in Nazareth confirms the lengths he was willing to travel to sing his love song for humanity. While this symphonic theme is similar through the pages of scripture, its resolution is on the Cross of Calvary when he sang in a loud, anguished voice, “It is finished.” My child, you are no longer broken. You have been fixed, repaired and made whole. Listen not to the cacophony of Voices which carry the stench of condemnation and death – hear my song instead. You have been redeemed and are no longer under condemnation.

For me it is a matter of daily attuning myself to that great song of love. Despite my failures, which are copious, I am not irreparable. In fact, that same brokenness is God’s chosen vessel to carry his Holy Presence into a world that has never heard His song. I cannot describe the challenge I face as I try and find the rhythm to this song each morning. Sometimes, for months at a time, I fear I have forgotten the tune all together. Then I become afraid that maybe I imagined the whole song. So I write. I allow my pain to channel my thoughts into patterns that can help me reason through the torture that is sometimes my existence. And through my pen I somehow manage to hear a faint tune, the theme that violence has trained me to forget.

The song soars on the air: “For those who are led by the Spirit of God are the children of God. The Spirit you received does not make you slaves, so that you live in fear again; rather, the Spirit you received brought about your adoption to sonship. And by him we cry, ‘Abba, Father’. The Spirit himself testifies with our spirit that we are God’s children.” Be not afraid. You’ve been adopted. Your heritage is no longer fear and condemnation. You are a child of the Most High God.

Tonight at bedtime, we read from Noah’s “Day by Day Bible”. He can quote the line of Patriarchs from Abraham through Joseph – backwards. When I asked him how he could remember all the way back to Abraham and his wife Sarah he simply replied, “Oh, we read that on a Tuesday.” It seems like Noah has learned to listen to the song better than I could’ve ever dreamed.

May he sing it for us all to hear.

Sunday, August 8, 2010

Held in Readiness

When you “grow up in the church” you learn its language. While different ecumenical traditions produce their own dialects, the meaning of some phrases is the same. Now I grew up in a hymn-singing church. In the age before screens and worship software, this necessitated hymnals. I can still remember the sound of 150 hymnbooks being drawn from their wooden slots on the pews. I can hear the pages being rustled – a distinctly different sound that the delicate pages of Bibles being turned. And we loved to sing. My childhood was filled with Sunday evening “Sing-Spirations”, where several local congregations gathered quarterly do nothing but sing for 2 hours. I remember leaving feeling like we could’ve stayed all night. In fact, there was an “All Night Singing” we attended each September. It was held in a pole barn down the road in South Georgia. In South Georgia, it is still really hot in September. For this reason, I remember my mother declining the invitation to go but my grandmother was always game for a road trip. We’d pile up in her Caprice Classic and take the 2 lane back roads south - she didn’t believe the interstate highway system because she said she’d learned to drive without it.

Now truth be told, I probably enjoyed singing so much because it was really the only thing a little girl (or grown woman) could really contribute to Church. I learned to harmonize and read music before I could read words. My ear became trained to the sounds of the melody going up and down the scale at a young age. Our hymnal also used “shaped notes” which made it really easy for anyone with a reasonable understanding of geometry to learn the sound of each “note”. (Not really, but this is just the way “I was raised…in The Church”.) Reflecting back, I am pretty confident in saying that women in our church took singing so seriously because it was their only offering to God. Singing was the Main Event for me. The “lesson” (or preaching) was just something that had to be endured between songs.

I am reflecting on a phrase I always heard just before the preacher got up to deliver his sermon. The worship leader would always announce the next hymn so that, upon the Invitation, singing could commence immediately. (I guess we weren’t high church enough to have one of those signs up front that you could change the numbers on.) So after the song before the sermon we’d hear, “Hold in readiness hymn number….” In this manner everyone would be ready when the time came for the Invitation. Holding a hymn “in readiness” could involve putting an attendance card in it’s spot or marking it with the silky page marker that ran down the center of the book. “Holding in readiness” never entailed turning down the page of a hymnbook or laying it open face down on the pew beside you. This was sacrilege.

So each week we practiced holding something in “readiness”. It never occurred to me how odd a phrase this was. I suppose it was important for the hymn to be “ready” when the preacher finally wound it down, but couldn’t someone have come up with a more creative phrase? It seems to me now this was tantamount to having the get away car running so that we could make a fast escape after the sermon. Remembering my grandmother’s disposition, I am surprised she never made fun of this herself. “Okay, keep your finger there – even if it turns blue - cause we gotta be READY!” (As you might guess, she and I were often separated during church because we misbehaved.) But I wonder now about the period during which we wait for readiness.

How do we know when we are ready? Does God have a timer going somewhere that is going to ding when I’m ready? Will there be such a radical transformation of my character that everyone will automatically know when I am ready? And ready for what by the way? I still attend a denomination that is predominately male lead. There are still precious few things a woman need even be ready for. We might be asked to read scripture or pray, if the setting is right, but that is pretty much still our limit. When you’ve been asked to pray aloud you’ve pretty much peaked in your ecclesiologic career as a woman in the South.

Enter “Theology Barbie”…

True to form, I am in general dissent with this practice. I don’t particularly have a “feminist theology”, I just like to tell people about Jesus and I happen to be a woman. I still love to sing and I can read the heck out of a passage. I can probably read it too well. Years of Sunday School and Bible Bowl has given me the distinct disadvantage of over-familiarity with Scripture. I know it, literally in some cases, backward and forward. But its more than that – I crave it. Knowing about the Bible makes me want to know it more. I’m not happy unless I can cite the passage I want to reference without looking it up first. It’s like a drug or something. My textbooks for my first semester of seminary just got here and it’s like I’m on crack or something. I start Greek in a little over a week. I’ve waited my whole life to learn Greek. Actually, I borrowed a textbook from a buddy and studied all summer. I find myself seeing the Greek word when it’s read aloud. Sometimes I even substitute it without realizing I’ve done it. This is not normal. I am not normal. I’m not even close to normal. I can’t even see normal from here.

The number one question I’m getting right now is: What are you doing with your ministry degree? The answer (which is technically “nothing but reading”) is: Going to seminary. The number two question is: What are you going to do with a seminary degree? The answer, technically and officially is: I don’t know. That’s the ugly truth of it. I just have no idea where I will ever fit into the picture I’ve been given of Church. As a matter of fact, I can be pretty sure that I won’t. But I still have a sense of longing and passion to do this. Am I wasting my time? Have I heard the wrong “call” (how I deplore that phrase…)? Is the return going to be worth the investment? Am I just driving my family into the poor house for nothing? Will I ever have a place in the Kingdom where I belong? Will I know it if I do? Is it possible to live for an extended period of time with this much uncertainty about the way God “gifted” you? I feel like a balloon with the air let out of it one minute and I run to my Greek flashcards the next. Is this healthy? Am I addicted to Mounce? How much Nouwen, Hauerwas and Wright can a girl read during a summer? (That one I actually know the answer to but decline to answer for fear of incriminating myself.) When will I know if I’m “ready”? And ready for what?

So I feel “held in readiness” right now. I try to focus on the word “held” rather than “ready”. I am aware that few of us ever feel ready. But to be held, that is a different proposition all together. I am desperately clinging to the idea that God is holding me. Holding me up…holding me in…holding me back….holding me together. I know not for what purpose. But I want to believe I am being held by the hands that formed a little girl’s brain differently - despite her church culture. I want to believe that there will be a time and place where I may be “ready” to be of help to someone again.

My skill set is, well, let’s just say diverse. I feel the first impression of being both too much and not enough at the same time. I’ve been told that I am among a rare breed of female theologians. Some days I feel downright endangered. But still I cling, tighter to the hands that “hold me in readiness” for something. Like that silk cord that marked a place for us to end our time of worship, I am shut tightly in a place where I’ve little room to move.

So I’m trying not to move at all, but rather grasp the hands that hold me in readiness.