Thursday, December 20, 2012

Bells Will Be Ringing

            Most people look forward to the holiday season with a kind of mania. In the sweltering heat of a late Georgia summer it isn’t uncommon to hear, “Only 120 shopping days until Christmas!” I’ve never enjoyed holiday shopping, but my son’s autism completely cured me of any interest in this phenomenon.
            The extra lights, smells, and sounds of the holidays often proved to be a tipping point into complete hysteria for Noah when he was younger. Blinking lights made him squint his little eyes or cover them with his hands. Christmas carols blaring over the speakers in a store declaring that it was “the most wonderful time of the year” were offensive to his sensitive auditory system. Strong smells of cinnamon brooms and pine resulted in repetitive hand flapping and other self-stimulatory activities that do not go ignored by other shoppers. We once went to see a holiday light display at a large garden only to have Noah completely loose his balance and fall in a lily pond. I am convinced he couldn’t even retain his sense of balance because of all the sensory input. It only took a few holiday seasons to leave me feeling particularly “grinchy” about the entire affair.
            But worst by far was the assault we would encounter on a simple trip to the grocery store during the holidays. As soon as I would open the car door, Noah would begin frantically chewing on his pacifier (or later a toy) in a fear response. I learned to register his panic and could immediately diagnose the source – that shrill, incessant ringing. Never decreasing in frequency, its high-pitched and piercing clanging grew as you approached the storefront. Some of you know that of which I speak – the Salvation Army bell.
            I am convinced that these people do an excellent work, but for the life of me I searched high and low for stores to patronize at which they were absent. The assault brought on by the ringing of those bells caused Noah’s nervous system to be overloaded for hours. It simply was not worth anything I needed from a store if I had to deal with an anxious autistic child for several hours to obtain it.
            In subsequent years, Noah would learn to integrate sights and smells into the tangled mass of schema his nervous system interprets. Visiting holiday light displays would become a favorite activity of his. He even learned to tolerate what we came to call the “Santa smell” so that he could visit that jolly old elf and present a handwritten list of toys he wanted for Christmas. But that bell continued to be despised by one and all, causing him to race through parking lots with hands over his ears to escape its alarming sound - until this year.
            A few weeks ago we arrived at our neighborhood Kroger store to pick up a few items for supper. I knew the bell was there and had taken Noah by the shoulder as we got out of the car to insure he wouldn’t rapidly run through the parking lot to avoid the noise. Suddenly, Noah turned back to the car saying he had forgotten something. I assumed he was retrieving a toy to manipulate in order to self-soothe or even a set of the earplugs that I keep in the glove box now for such occasions. I saw him hastily shove items in his pocket and return to my side. After we traversed the parking lot he surprised me at the curb by speaking to the Salvation Army bell ringer. We have been working on social skills, but it seemed odd to me that Noah should seek out the perpetrator of our discomfort for a random meet-and-greet. I rushed him into the store and we began our shopping.
            At he conclusion of our purchases, I began to maneuver the shopping cart through the automatic door only to have Noah race out in front of me. I hurriedly abandoned the cart to prevent him from dashing into on-coming traffic only to be brought up short by an astonishing sight.
            The bell had stopped ringing and Noah was standing face to face with the Salvation Army volunteer. I did not know what he had said to begin the conversation but the response from volunteer was, “Well thank you young man.” And with that, Noah began to empty his pockets into the red cauldron. When Noah had returned to the car for what I assumed was an object to soothe himself, he had actually emptied all of the change from the console. When I arrived at the scene the volunteer said, “Your son just thanked me for my service. What a considerate young man!” I thought, “You have no idea what it took for him to approach you sir.”
            Before we walked away Noah insisted on placing a sticker from a roll the lady at the cash register had given him on the apron of the volunteer. The man laughed and smiled and shook Noah’s hand. (If you happen upon a Salvation Army volunteer in the greater Cumming area with an “I’ve Gone Krogering” sticker on their apron you’ll know we’ve been there.) I was overwhelmed with questions as we walked through the parking lot.
            Once settled in the car, I asked Noah about what he had done. He said, “That bell is terrible but he is working to be kind for others. That is what I want to be when I grow up. I want a job where I can be kind to others. Its like Jesus.” I suppose sometimes we have to be willing to allow ourselves to be assaulted by the overwhelming and uncomfortable in order to show the kindness Jesus calls us to.
            Teachers and administrators at Noah’s school have told me that he displays an atypical amount of empathy for a child with his diagnosis. The word autism comes from the Greek word “autos” meaning “self.” And there is an element of this disease that gives Noah the appearance that he is preoccupied, primarily with himself and his feelings. What I have observed, however, is that this does not mean that Noah does not concern himself with the feelings of others. Rather, as Noah detects the circumstances and feelings of those around him his autism cues him to apply those feelings to himself. In this way, Noah experiences more of the feelings and emotions of those around him – not less. He has more empathy because everything that happens to those around him actually happens to him too.
            I believe this is what prompted Noah to actively move beyond his comfort zone to participate in kindness. His life is more experiential than mine. From the excess of senses that his brain funnels through his nervous system to the way he encounters the hardship of others, Noah’s life is more textured and richer because autism gifts him in this way. Astonishingly, his empathy response prevails over the anxiety and fear triggers and Noah can be more like Jesus than I can.
            Noah’s occupational goals now include Salvation Army Bell Ringer. God bless us, every one.

Saturday, September 22, 2012

Say “Hi” for Me

            The words I had hoped for finally reached my ears. Noah proclaimed, “Mom, I did it! I made a friend!” Moving and starting a new school has been a challenge for us both, but the social impairments that accompany Noah’s autism prevent him for making friends easily. I eagerly asked what his name was and he said, “Lauren.” Before I could comment on that bit of information, Noah added this: “And one of the things that makes her so cool is that she gets to carry a stick around all the time! You know why? Because she is TOTALLY blind. Cool huh?”
            I paused at this comment. Inside I already knew that truth, Noah had gravitated toward the special education class once again. We’ve worked hard to pull him out of the self-contained classroom, hoping that exposure to “normal people” (the neurotypical - meaning those with typically functioning brains) would increase his social skills. As it turns out, being around normal kids just amplifies his differences and makes Noah stand out more. Still, I had prayed for maybe a shy, average little boy. Instead, Noah had found the opportunity to seek out a member of the self-contained class at recess. He went on to describe Lauren to me physically. I asked what they did at recess since Lauren couldn’t navigate the playground very well. He said, “We sit and listen.”
            Hypocrite that I am, I was still somewhat disappointed that Noah wasn’t connecting to typically functioning people. But I decided to be glad that Noah had reached out to anyone at all. Its strange how after everything I have studied and written, I still occasionally miss the grander picture that we are not just bodies and minds alone, but being created in the image of God. All of us.
            Flash forward two weeks and Noah races into the living room at seven o’clock one evening to announce that he wants to do something special for his teachers and friends. He proclaimed that it was time for us to bake chocolate chip cookies. Hoping I didn’t have all the ingredients (Drat – they were all there!) I was motivated to get up off the couch by Noah’s persistence.
            He mixed the batter using my Oster hand mixer and the noise reducing headphone my dad used to wear around jet engines in his job at Delta Airlines. Noah happily spooned them on to cookie sheets and we proceeded to make around four-dozen cookies. I got out cellophane bags, markers and tags to address each bag of goodies. Soon, Noah list of four primary teachers had grown to include the paraprofessional that is helping him learn the recorder in music class, the teacher across the hall from his homeroom (who has probably helped him at this locker), the school secretary who has embraced him as a member of the safety patrol, and the principal. Just when I thought we were done he shouted, “Oh! I can’t forget Tony and Lauren!” (Tony is another friend Noah made from Lauren’s class.)
            The next day on the way home from school I asked Noah how everyone liked his gifts. He smiled and showed me a note on a piece of off-white card stock. Closer inspection showed that the note had been carefully hand lettered by an adult just under Braille imprints. The note read, “Thank you for always asking how I am and saying hi.” Still smiling, Noah said, “Its from my friend Lauren.” Choking back tears, I drove home in silence. But inside I was begging for repentance for being disappointed that Noah hadn’t made friends with a normal kid.

            When I got home I asked to see the note and it was then that I remembered Noah’s comment about their playground activity. He had said that they just “sit and listen.” From Lauren’s perspective, this is a busy and on-going activity. It is one of the primary ways she “sees” the world around her. It was then that I realized that she was thanking Noah for simply slowing down to notice her and for speaking to her. Which implies that Lauren realizes there are a lot of people who don’t notice her – or who do and fail to slow down to speak to her. Of course, she senses these people around her. She can feel them and hear their presence. But Noah, of all people, engaged with her.
            I use the expression “of all people” because Noah is, diagnostically speaking, not very capable at starting and sustaining conversation. He is no brilliant conversationalist. As it turns out, Lauren doesn’t need very much conversation. Just saying “hi” is all she really wanted. And Noah is capable of just about that. Additionally, I think what Lauren really enjoys is someone who will experience the world alongside her. Just sitting and listening on the playground with someone else is a gift to her. Lauren was created for community the same way we are. And Noah is able to participate in community with Lauren in a way that is very full and rich and meaningful for them both.
            I’ve gleaned a few insights from Noah’s recent encounter. First, I must to continue to develop a sense that people are more than traditional ideas about mind (intelligence) and body. I think this will help me see people as God sees them and then classifications like “normal” will be obsolete. Secondly, we are created for community. Sometimes, others help those of us who aren’t as socially adept into community. Noah reached out to Lauren. Ideally, someone else will reach out to Noah. Who will I reach out to?
As we reach out in love to draw others into community, never under-estimate the power of a simple “hello.” Just acknowledging someone’s presence with a friendly gesture can be all it takes to extend God’s love toward him or her. Speaking as the parent of a child with disabilities, I can say that if you want to be the highlight of their entire week, just notice them. Often we’ve been noticed with stares and giggles in a “take-a-look-at-that-freak-show” kind of way. Obviously that isn’t what I am talking about. I mean to resist the urge to ignore they are there. Sometimes we politely ignore their existence as if it is in poor taste to admit disabled people exist. Or maybe we think it is contagious. Or maybe if we get too close, we will realize we aren’t as different from them as we’d like to believe we are.
So next time you encounter the marginalized in society – those broken because of sin, the disabled, people struggling with addiction, welfare moms, or just the down-and-out – do Noah and I a favor. Extend kindness. Acknowledge their existence. Embrace them into God’s community where the word normal doesn’t exist.
And say “hi” for me.

Monday, January 9, 2012

Living Under the Influence

I was anxious about it. Without question, it was going to be a day that would leave me feeling less-than, shameful, disgraced and wasted. It was one of those situations where you just beg God to get you through what is surely going to be several consecutive hours of indignity.

A few months ago, unbeknownst to me, my auto insurance lapsed due to a paper work error when I purchased a new vehicle. Somehow in the mix of things, my insurance didn’t get transferred on time. This minor infraction was not so minor to the City of College Park who ran my plates one morning last summer as I ambled through town taking Noah to summer camp. While I did not receive a moving violation, my license was suspended and there were auspicious fines. One of the conditions for renewal of my license to drive was 6 hours of a Defensive Driving course. So Saturday morning, I set out to fulfill my requirements and put this whole experiment in failure behind me.

I’m a woman who desperately tries to give the appearance of someone who reasonably has it “together”. But invariably, no matter how dressed-to-kill I am for an interview I’ll customarily step in dog poop on my way in the door. Knowing this, I never shoot for perfection, but rather “not so bad”. But let me just tell you that there is nothing that can make arrival at a building labeled “D.U.I. School” on a bright yellow banner sexy….nothing.

Anxiously I made my way into building to register and begin the shame of this entire event. I was apprehensive because I knew there would be an examination in order for me to complete the requirements. Assessments always make me nervous. Some part of me is relatively certain that I will experience failure no matter how hard I try. I hate to fail. Loathe it. So nervousness, added to my shame, brought a specific tension to this episode of my life. Typically, this level of worry blinds me to logic and reason. To put it rather succinctly, I was afraid.

The intake process left much to be desired as the dear older woman who was hard of hearing shouted my name and the words “So yer here for license reinstatement!” at the top of her lungs. I smiled to her, and at the rest of the class who now knew that I was not here merely as a conscientious citizen who was wishing to take a class in my spare time to reduce my insurance premium. I soon found out that the rest of the class was laughing because this had happened to each one of them when they registered as well. Her abruptness created an intimacy that didn’t allow any of us to pretend why we were there. And it was funny…until Amelia came in.

Small and thin, I could see that this young girl was just as apprehensive as I was about what the class would bring. When she approached the table she found that her paperwork wasn’t there. Our kind host yelled, “What’s yer name again?”

The frail girl replied, “Amelia Armstrong.”

The lady behind the table yelled, “Its what? Yeh’ve got to speak louder.”

“My name is AMELIA ARMSTRONG!” the small girl shouted over the giggles of the class. By the time the intake lady heard her, this girl had announced herself at the top of her lungs no less than 5 times. Everyone knew her name. I began to step out of my own panic and feel sorry for this girl. The interchange continued:

“I don’t have yer paperwork! What are ya here fer?” inquired the lady.

“I just came to take the class,” answered the girl. (repeated again at ear splitting decibels)

“Well, what was yer ticket for? What did ya do to get here?” bellowed the lady.

This girl, who was at the point of tears said, “I didn’t get a ticket, I just don’t have a license and I need to take this class.”

Completely oblivious to her anxiety the woman replied, “Honey, ya only take this class if ya got yerself in a bind or are doin’ it to reduce yer insurance. Which is it?”

Amelia admitted, “I don’t have a license because I failed the test and now I need to take this class.” This, of course, went unheard and had to be repeated. It was painful to watch. I suspect that I am not the only one who just wanted it to stop but we all just stared down at our own paperwork and tried to pretend this wasn’t happening. It embarrassed us to acknowledge her pain and inadequacy so we ignored it.

Once her paperwork was sorted out, Amelia took a seat at the table behind me. I could hear her quietly sniffling. My disgrace began to disappear (without my knowledge or permission I might add) as I ceased wondering how I got here and felt compassion for this girl. As the class would progress, my compassion would grow in proportion to her humiliation.

Just before our first break, the instructor, who was reading his instruction from a 3 ring binder, mentioned blithely, “This un’s important – it’ll be on the test so remember…” This was followed by a string of statistics, which he did not slow down to recite nor care to repeat. It was all Amelia could take. I overheard her crying as she talked to someone on her cell phone during the break, confessing that she should have known she’d “fail this too.”

Another hour of statistics, rules and regulations followed. It became pointless to glance at your watch because it was clear that we had entered a time warp. Just before our second break he finally asked if there were any questions. Amelia shyly raised her hand and asked, “About the test, I was told I could have accommodations.”

While this immediately captured my attention (because it is a phrase used in the world of special education to indicate reasonable adaptations to assessment), it was completely foreign to our instructor. He looked at her quizzically at first, then said, “What kinda accommodations?” as he shuffled through his binder. I risked turning to catch my first glimpse of Amelia to see her red-faced and clearly embarrassed. She started to mumble, “Oh I’m sorry, never mind.” When he shouted over her, “What do ya need accommodations fer? What kinda help ya lookin fer?” Amelia was speechless. Our instructor continued, “What wrong with ya that ya need help?”

In an effort to stop this mortifying exchange, several of us got up and began the break without permission. Amelia fled to the safety of the parking lot. Oncoming motor vehicles were a welcome threat compared to the classroom. Quite uncharacteristically, I strode toward Amelia and introduced myself. She wiped her tear stained face and politely took my hand saying, “I’m Amelia, but I guess everybody knows that since I had to yell it so many times.”

It was clear to me that Amelia must have some sort of learning disability. A few of the telltale signs were there. She was fidgety and her nails had been chewed to the quick. The document on which we were filling in the blanks in order to take notes (which was full of incorrect grammar, typographical errors and misspelled words…thank you very much Department of Driver’s Services) was full of little drawings and doodles in the margins. Her shoes were scuffed on the toes from constant rocking back and forth in anxious, repetitive movement. And she was so terribly sad.

I told her I just wanted to help her in some way, that I wasn’t being nosy but that my son required accommodations so I understood her question, and asked if I could help. Her face looked hopeful for the first time as she asked, “Oh, do you know anything about dyslexia? That’s what I have. It’s why I failed the written test. I knew I would, but I had to fail it in order to be given the chance to take it orally so I can pass. But I also had to come here and pass this 6 hour class.” Suddenly, my fears and failures paled in comparison to the troubles of this girl who had actually been forced to fail before she could ever hope to succeed.

Over lunch, I learned that Amelia was much older than she looked. At 21 years of age, she had never even tried to obtain a driver’s license because she knew she would fail the written exam. When she heard there was an oral exam she was excited, even though realized she had to fail the written exam in order to be given a chance to succeed. Her reason for obtaining a drivers license is to have the capability to drive in order to get a job. Also, she is trying to complete her high school diploma at a local technical college with resources for learning disabled students. The special education resources in her county hadn’t been able to provide Amelia with the opportunity to graduate with anything but a Special Education Diploma, so she had dropped out of school years ago.

As I listened to her story, this frail girl transformed from a weak and delicate creature to a mighty warrior. She was the bravest person in the classroom that day. She had charged into certain failure, more than once, just for the slimmest chance she might succeed. Without an advocate, she had been marginalized and discounted for most of her academic career. And she had been more than willing to fail that first written test, risking humiliation, just to have an opportunity for something other than failure. Her courage was humbling.

So I had a choice to make. I could offer sympathy and prayer – or I could get involved. Please know that I NEVER choose the latter. I’m the advocate for one little special person and that keeps me plenty busy thank you very much. But her palpable pain was more than I could take. I knew that a Kingdom response meant more than just well wishes for her pain. In my mind I heard a friend’s favorite verse: Do not withhold good from those to whom it is due, when it is in your power to act.[1] So I “got involved”…I meddled…I was a busy body…I challenged the status quo. I stepped up for this stranger. I still don’t know why, but I did.

I pulled the instructor aside, and without much overture, explained Amelia’s disability and the nature of the accommodation she was entitled. He didn’t challenge this at all, but expressed frustration at the pressure he felt to get everyone through the class. After all, how was he going to keep his own success rate up if he couldn’t get the sleeping teenage boys through the examination? His solution surprised me. “Caint you just give her the test? If ya know what needs to be done just get her through.” Suddenly I was a test proctor.

Now please know, I was still nervous about my own performance on this test. Advocacy had not completely diminished my anxiety about avoiding failure. However, I found it increasingly difficult to panic about my own welfare while truly being concerned for another’s. So I had to quit thinking about my success or failure. I simply had no choice at this point.

I had moved my seat, at Amelia’s request, in order to sit beside her. In her words, it “calmed her down to be near a friend”. Friend? We had just met! But I was the only friend Amelia had in that room. When the time came to take the exam, I was mortified to see the worst visually organized answer sheet I’ve ever seen. Clearly designed to assist the instructor in efficient grading, it was unfeasible to expect Amelia to even see the place where she could place a correct answer. In addition to this, the recycled copies of the exam were so wrinkled and copied on such poor quality paper that I could barely read it.

I read Amelia her exam, and filled in the answers she gave. She laughed and smiled at some of the ridiculous options on the multiple choice questions. When it came time to fill out my own answer key, it barely registered that I was performing for assessment at all. I had completely lost myself in Amelia.

Neither of us failed that day.

This class – which, by the way, spent zero time on any matters pertaining to insurance violation – served to teach me about more than the consequences of driving “under the influence”. Instead, through a set of terrible circumstances I became involved in an opprotunity to live under the influence.

Living under the influence means that I, first and foremost, recognize the kingdom responsibility I have to extend kindness. “Not withholding good” means more than just the cessation of negative actions and behaviors toward the disadvantaged. It means choosing to dedicate myself to those who the Proverb writer describes as “due” a good deed. How did I know she was “due”? Well, I simply put myself in her place – which wasn’t hard to do since I was anxious as well. This started when I quit being embarrassed by her and stopped trying to ignore her pain. Not everyone I encounter will be as easy to identify with, but I pray to be attentive to their pain. Pain is a place where I can meet most of the world because, probably like you, I am no stranger to it.

Secondly, living under the influence of the Kingdom means I share my resources – no matter how meager. I mean, what did I really have to offer? We were all equally in need of what the class offered. I seemed as poor as the next person and as ill equipped to offer hope of success. What I had to offer was cheap – it cost me nothing. I listened and acted with just a mustard seed’s worth of compassion. I approached authority in her place and pleaded her case. And I was, for whatever reason, heard. From a place of poverty, my insufficient resources were more than enough for God to work through in Amelia’s behalf. Our small, inadequate, insufficient and even sometimes trivial assets are mustard seeds of potential in the hands of God.

Lastly, living under the influence of the Kingdom might mean forgetting personal fears and inadequacies in order to be fully available for God. How I helped Amelia was, by absolutely no means, a huge sacrifice. It wasn’t even a grand gesture. It’s almost not even worth mentioning. But it did require me to stop thinking of my own goals, aims and ambitions in order to allow room for “otherly” compassion. I found it quite impossible to be wrapped up in myself and act in someone else’s behalf simultaneously. I only write about it so you might see how very little it takes to be of use in the Kingdom.

I don’t really know what inspired me to write this story. Honestly, I almost quit after the first paragraph. My finger was poised on the delete button when my cell phone rang. It was Amelia. She just called to say “thank you for being my friend”. Her last comment to me was that I really must “believe in God” to have been so kind to a stranger.

I told her I hoped to see her on the road.

[1] The Holy Bible : Today's New International Version. (Grand Rapids, MI: Zondervan, 2005), Pr 3:27.