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.