Tuesday, November 29, 2011

Just Like Me

for those of you who've asked for another post and have been wondering what I've been doing...

“Mom, I need to ask you a serious question.”

This is never the way I like to begin our day. This could mean anything from “Where do babies come from?” to “Why aren’t there more marshmallows in my Lucky Charms?” These “serious questions” can be equally benign or hazardous. What followed this morning was some of the best autism born theology to date.

Noah continued, “Why does my baby Jesus have yellow hair?” Noah was referring to the figurine of baby Jesus that accompanied our Fischer Price nativity set. After the debacle that was trying to get our Christmas tree up and decorated last night (My kingdom for a set of Christmas lights that illuminate the length of the entire strand!), holiday décor was the very last think I wanted to discuss this morning. I sighed and brought my coffee cup to my lips before responding. Before I could swallow Noah expounded on his dilemma.

“You see, I don’t think Jesus had yellow hair at all. I don’t think he looked like that. This Jesus looks like me. I don’t think Jesus was like me at all. What do you think Mom?”

I replied that Jesus probably didn’t look like us. We discussed that he probably resembled someone with darker skin and hair. I tried to compare him to friends Noah has of Middle Eastern descent. Growing impatient Noah interrupted me. He said, “But why did they need to make Jesus look like us? That doesn’t even make sense!”

Secretly, my heart swelled that Noah needs the Nativity to remain true to the Bible, but I was at a loss for a way to explain this phenomena to him. All I could say was, “Well, I think it makes some people feel more safe if Jesus looked just like them.” Noah’s conclusion to this statement was priceless. With all of the innocence that his autism riddled mind could deduce Noah said, “A Jesus that looks just like me does not make me feel safe at all. I think yellow haired Jesus creeps me out.”

I’ve been reading quite a bit of anthropology for one of my seminary classes. There is a constant tension in our reconciling the humanity and the divinity of Christ. I want him to be human. I want to know he can identify with my suffering in every way. I believe in that ἐκένωσεν – that emptying out of his divine nature in order to participate in humanity (Phil. 2:5-11). But when he is nothing more than human, I must agree with Noah “a Jesus that looks just like me does not make me feel safe.” The difference between Noah and I is that I often feel and act like it is just that kind of Jesus that I am looking for because for the most part, I try to save myself.

I desperately look for a Jesus who would handle situations the way I would handle them. I want a Christ who prioritizes my comfort instead of my character development. I’d like Jesus to be the Savior of my bills and checkbook instead of my soul. I cry out for a Messiah to come for relief in my daily struggles instead of one who is surely seeing a bigger picture of my human plight. In actuality, I am searching for a Jesus who looks just like me.

Noah comes from a different set of assumptions. As a child with acknowledged, documented and notarized learning deficits, Noah fully identifies with his need for someone other than himself to be his Savior. He does not do this through self-loathing. Noah, in realizing his limitations, is not compelled to identify so much with Jesus that he recreates him in his own image. In his own words, this does not make him feel safer about his situation. Instead, Noah finds more assurance in a God who is drastically different from him.

We might easily say, “Yes, well, if I were dealing with the disadvantages Noah does I would realize the need for a bigger and greater solution than myself as well.” My answer to that is: But aren’t we?

Aren’t we all completely disadvantaged? Is any one of us able to save ourselves? If we were the answer to our own predicament could any of us truly solve it? Oh, perhaps on the surface we could resolve some issues. The work ethic in which I was reared told me that if I just work harder and “pull myself up by my own boot straps” then I could clear any crisis. But sincerely, that just isn’t true. Hard work is virtuous, but it isn’t enough to combat the brokenness of my personal struggles or, more importantly, the brokenness of this world. Physically, I have struggles that no amount of money could cure. Spiritually, I often feel bankrupt as well. Emotionally, I am sometimes a dry well. Financially, try as I might, I just cannot get ahead. I am simply not enough. A Savior who would tell me to just work harder to make things right by my own efforts is the last thing I need. A Jesus who would solve problems like I would if I could, again in Noah’s words, “doesn’t even make sense.”

So how do I reconcile his humanity and divinity? I don’t. For me, the beauty is in the continual process of ceasing to reconcile Jesus to myself and instead reconciling myself to him. The question is not “How was Jesus like me?” but “In living, what ways did he show me a better way to be human?” The Jesus who said, “Foxes have holes and birds have nests, but the Son of Man has no place to lay his head”[1] is my kinsmen redeemer. Following him never guaranteed an easy, comfortable position in this life. The kind of work I have chosen for my life will, most assuredly, bring me to financial ruin. His redemption for me is not deliverance from my hardships, but peace within them because Jesus is not like me.

When looking at suffering humanity he was overcome by compassion because Jesus is not like me. Jesus took time to bring a little child, a marginalized piece of humanity who could not possibly contribute financially or substantially to his ministry, into the midst of a busy day because Jesus is not like me. The Savior who slept at the bottom of a boat during a storm is not like me. A Messiah who blamelessly died on a cross is a Jesus not like me. But it is that same Jesus who bids me to come, take up a cross, and follow. It seems he doesn’t want me to spend so much time finding ways he was like me as he does finding ways to be like him to a world so desperately in need of a different kind of Savior. And thank God for that different kind of Jesus because I agree with Noah.

A Jesus just like me creeps me out.

[1] The Holy Bible : Today's New International Version. (Grand Rapids, MI: Zondervan, 2005), Mt 8:20.

Sunday, March 20, 2011

The Autism Gospel - of Rejection & Fortune Cookies

Noah and I went out to eat this week. It was really just something to break the monotony. Actually, we were a little down and I thought it might cheer us up. He loves to eat in restaurants, especially new ones. Yeah, I’ve got one of the only autistic people in the world who likes to travel to new places and do new things. So I figured it would be just the pick-me-up we needed to push through our week. He loves Chinese, mainly chicken wings and rice, so we tried a new place.

It had been a long day for us both. I was glad not to be cooking and just to spend some time talking to Noah. But he wasn’t even close to being in a conversational frame of mind. I could tell he was tired because he was flapping with one hand and holding an object close to his face with the other. When he stims like this, it is a glaringly obvious sign that he is physically and neurologically over-taxed. I corrected him twice and he responded with his typical, “Sorry Mom. I’ll try harder.” After a few times of that I just thought, “Screw it…I’m tired too. Flap if ya gotta flap!”

It was a little early for the dinner crowd, so we had most of the dining room to ourselves at first. But just after we ordered our meal, a well-dressed couple was escorted to the table beside ours. Just as the lady sat down, Noah flapped. Then I heard it – a gasp-grunt. Out of the corner of my eye I saw her flag down the hostess. She said, purposefully loud enough for me to hear in an otherwise quiet dining room, “We can’t sit here. We’ll have to be moved.” Well, my head spun around on my neck because I thought there must be a leak in the ceiling over her table or rat droppings or something to put her nose so out of joint. But when I turned around and met her sneer, I realized that her problem was us. Noah continued to flap (this whole exchange lasted maybe 45 seconds) so he missed her subtle eye roll in my direction.

I felt like I had been slapped hard across the face. Now, I’m not completely unaware when we are attracting attention to ourselves. I work pretty hard at making Noah aware of his behaviors and try teaching him to curtail the completely unacceptable things he might be prone to do. So I can honestly say that, as disturbing behaviors go, I’ve seen lots of “normal” kids behave worse in a restaurant. But this wasn’t about being around children in general, because they were sat by a family of 4 in the far corner of the room. No, it was about our “differentness”.

This has happened before. But it was a long time ago. I had forgotten the painful sting this brand of rejection leaves. Honestly, I could barely breathe. The waitress, who had seen the whole thing unfold, was quietly sympathetic. She spoke kinder than was necessary to Noah. He, of course, returned her kindness with over-the-top manners he must’ve picked up from watching re-runs of some Father Knows Best variety television show. He said things like, “thank you for being so sweet to us” and “I hope you aren’t tired after work tonight” and “aren’t you kind”. The more he tried to show thanks for simple kindness, the more sick to my stomach I became. When I knew she would watch him while I went to the restroom, I quietly excused myself. Once safely in a stall, I cried my eyes out. After washing my face in frigid water to get the swelling down, I returned to the table.

Just when I thought the worst was over, I felt someone else staring. From over the top of the partition, I saw the hostess catching a peek. As if on cue, Noah began flapping again. I sighed and put my head in my hands. When I looked up, I saw the hostess escorting another couple to the other side of the restaurant. It was now the dinner rush. I watched family after family come in only to be seated as far as possible from Noah and I. We had been quarantined.

At some point Noah noticed because he glanced around and said with a grin, “Well, I guess it’s just us huh? Kind of romantic.” I smiled a watery smile and choked down a bite of dinner. Its funny how even the moistest of food can turn to sawdust in your mouth. But then Noah began to tune into the worst thing he possibly could have – me. He read my distress and responded with, “Mom, I love you.” I answered that I loved him too. More than anything. No less than ten times during our meal, Noah told me that he loved me – more than anything.

At this point, you may be wondering why I collapsed instead of responding in my usual snarky flesh. All I can say is: Sometimes, even the feistiest of us loose our snark under the strain. It did occur to me later that I could’ve hollered across the room to that first woman, “Hey lady! Did that lump you came in here with tell you he loved you during dinner because this kid that wasn’t good enough for you told me about ten times!” I thought of TONS of horrible things I could have said. Luckily, I was just too beaten down to come up with them at the time. But then I had a thought that I’ve been prompted to consider through some reading and preaching I’ve been listening to.

What would Jesus have done? Not WWJD – “What would Jesus Do?” But, what would Jesus have done if he were me living my life in that very moment. The process of trying to picture Jesus as the parent of an autistic child proved too much for me that night. But I did wonder this: What would Jesus have done if he had just happened into that restaurant that very night and seen everything unfold? Believe me, I was praying desperately to feel him at that table. The rejection was so, well, violent.

Normally we think of violence as a physical act of aggression. But I think I experienced a subtler and deadly form of violence, and perhaps one more common than even physical aggression. We were simply rejected precisely for who we are. There was no second chance at redemption. We weren’t offered an opportunity to explain our exceptionality. We were just cut off and discarded as broken beyond repair. We were an embarrassment. Our awkwardness and inelegance brought shame and isolation. We were invisible.

We were each story of every marginalized creature Jesus came upon during his ministry. We were ostracized and in need of inclusion. We were diseased and in need of healing. We were unclean and in need of justification and cleansing in order to be made whole again. And we aren’t the only ones.

As alienated as I felt that night, and for several days afterward, Noah and I are not alone. More and more frequently, I am becoming alert to hurting and broken people. Often we are tempted to think that people are experiencing a reality they had complete responsibility for influencing into existence. Often times, as with us, that is not simply the case. Even the most sinister of objectives have unpredictable conclusions. Likewise, the most innocent of best intentions can be catastrophic. There is not always a simple answer for suffering. And even if it appears there is a simple answer, the root causes for some issues are too complex to explain away in an attempt to systematize pain and suffering. I’ve noticed when we work so very hard to explain affliction and distress that we are doing so in an effort to exclude ourselves from a possibility of such tortures in our own experience. In other words, if I can explain how that person got into his or her situation I can keep myself from suffering similarly.

But we are missing the point.

I don’t think we need to explain it away. I don’t think we are ever called to figure it out. As a matter of fact, I believe we’ve been mandated to act in light of the fact that we cannot comprehend it. I don’t think love takes the time to evaluate suffering that way. Love simply acts in the face of the uncertainty. Love moves in the midst of the mess. Christ’s kingdom on earth wasn’t meant to assess every risk and liability associated with agape love. If that were the case, no one would take a risk on Noah and I because we don’t look that good on paper. No, kingdom doesn’t work that way. It isn’t logical. Very often it is counter-intuitive. It runs toward instead of away. It embraces instead of alienating. It takes on the suffering of the world. It takes those we wish were invisible and brings them into glorious, healing light.

Where was Jesus in the Chinese restaurant? He was a young woman who appeared to be about 5 months pregnant who was waiting tables. Her eyes were tired and she looked dead on her feet. I’m sure she didn’t understand the complexity of Noah’s neuro-diversity. She probably didn’t have a certification in Autism Spectrum Disorders. In all honesty, I think she was probably a college drop out. But she didn’t seem to feel the need to place us on the continuum of acceptable risk. Instead, she was kind. And it didn’t cost her a thing.

I ended up bringing most of my dinner home. I even packed up the fortune cookies because I just couldn’t stay in that room one more second. A few days later Noah pulled his off the counter and opened it. It read: “You will influence many people with your words and travel far.” Ironic, but no less so than mine which read: “You are cherished.” Neither fortune seemed appropriate that night because I forgot that kingdom is often found in the small, least likely of places – like the face of a waitress who wasn’t too tired to be kind to a child who appeared to be retarded on the surface but could meet kindness with kindness. And in the words of that same child as he comforted his mother with the words: "Mom, I love you more than anything."

Maybe our fortunes weren’t so wrong after all.

Saturday, January 29, 2011

The Autism Gospel - of Owning My Shoes

....for Virginia, who asked for it:)

Autism has encouraged my own sense of style. When I’m truly being “me” my natural curly hair is flying in no less than 100 directions and the only make-up I wear is lip gloss. Business casual for me is cargo pants and flip-flops. If it is winter, I might wear my favorite pair of cowboy boots I got second hand at a thrift store accompanied by my ripped jeans. I can dress up. I actually clean up really well I’ve been told. But why bother? Some days are just a waste of make up. And who wants to make the commitment to get all “cover girl” when your kids spazzes out when you turn on the hair dryer?

So, whereas a lot of my friends have gotten all grown up and started dressing like respectable women of society, I remain resolutely unrespectable. My dearest friends know this about me. They don’t expect me to get prettied up or carry a purse (which I also loathe) when we go out to dinner. They know that “cute” is not a word that can ever be applied to my persona. Ever. They don’t try to “cute” me up. This is what makes them my friends.

Most of my clothes are given to me because I HATE to shop. I’d rather have elective surgery than go to a mall. It’s just who I am. My friends know this and don’t even think about inviting me to the Black Friday Shopping Day. They know I’d rather be home watching football and reading. Despite all indications to the contrary, I think I might be missing a chromosome somewhere.

Having an autistic kid has been a great excuse to get me out of some things I already hated doing. There – I said it. Now you know.

But in all sincerity, shopping malls are sensory minefields. The lights, sounds, smells, and crowds of a store are very difficult to navigate. Many times we have had to throw coats over our heads and take the perfume counter at a dead sprint because it “smells naked”. (I think that means that it smells like one might when just out of the shower, but who knows what Noah means sometimes.) I lose count of how many times Noah fell into fountains because the stimulation of the sound and smell of chlorine threw off his vestibular senses. And trust me, we make a BIG splash. Rounding off our “greatest hits at the mall” is the fact that Noah loves the silky feel of lingerie. Nothing like taking an autistic 9-year-old boy into the lingerie section for a sensory break. Sometimes I am even creeped out by us.

So when I needed new shoes for a wedding I was attending, you can only imagine my joy at taking Noah along. Rejecting the idea of a traditional mall, we went to a shoe store at an outdoor mall. I figured we would make less of an impression, there being fewer people to witness us and all that. But I knew the smell of leather was a trigger, so I put him in a large shirt that he could pull over the lower part of his face. So into DSW I go, accompanying Noah who looks like a terrorist or bank robber with his shirt collar pulled up under his ears and only his eyes showing. I remember opening the door for him and thinking, “let’s see if we can get in and out of here without hurting ourselves or anyone else”.

I was looking for black pumps. How in the hell was I to know there would be just over 30 varieties of black pumps? Who has the time to design all these shoes? I don’t want to tank our economy or anything but don’t we still need a cure for cancer or something? I sighed a sigh of exasperation as I walked the aisles with Noah in tow.

When I began trying on shoes, I let him lie prostrate over one of the benches in the aisle. Sometimes laying upside down and changing his horizon line can reboot his sensory input and give us a few extra minutes. I learned this little trick early on and would often encourage him to hang upside down at any opportunity if it gave me extra time to accomplish some task or another. Seeing the world upside down makes him feel better.

I had finally found a serviceable pair of shoes when I turned to find Noah gone. My heart lurched into my throat as I went into full panic. Quickly scanning the rows, I could not see him. But then I heard it – the “ooo-ooo-ooo” that characterizes our self-stimulatory behavior. I found him two aisles over sitting cross-legged on the floor and rapidly flapping over a pair of shoes. Dampening down my panic, I strode up the aisle to make our get away.

When he turned and saw me coming he jumped to attention and said, “Mom, I found them. I found your shoes!” In his hands Noah held the most vulgar pair of red, patent leather, spiked high heels I have ever seen. In my mind I could hear my grandmother commenting on the parentage of a woman who would wear these shoes in public. Only a woman of “ill repute” would even admit to having these shoes in her closet. And Noah thought they were the most beautiful things he had ever beheld.

“Oh, sweetheart.” I prepared him, “I just needed plain black. But thank you so much for helping me and doing such a good job of being patient while I was looking.

Then Noah said something that completely threw me under the bus. “But Mom. These are your shoes. You own these shoes Mom. They are beautiful-shiny. Just try them on. Please!”

What did he mean I owned these shoes? Was he questioning my parentage? Nope. The look of adoration on his face said that he thought these were the most stunning pair of shoes he had ever seen. To him, they were made for my feet. Tears were swimming in my eyes as I hastily looked over my shoulder to check and see if anyone from the church was in the immediate area . (You know they have radar on their staff because just order a beer in a restaurant and six elders walk in.) Secure that we were alone; I rummaged the shelf looking for my size. Sure enough, there was a pair of size 6s.

He began to flap excitedly as I slipped off my flip-flops and into the red high heels. When I had them on his face broke into a joyous grin and he loudly said, “Those are your shoes! You own those shoes! You own those shoes!” I checked the price and gasped! There was no way I was buying these shoes. But then he said, “Mom try them out with me. Can I have this dance?”

Suddenly I realized the in-store music was playing “Unchained Melody” by The Righteous Brothers. Noah stepped toward me and put his dirty little hand in mine and proceeded to slow dance with me in the aisle. He watched the shoes as we danced and repeated over and over again, “Mom, you own those shoes! So beautiful- shiny.” Hot tears ran down my face and into his hair.

In Noah’s eyes, I was the most beautiful woman in the world deserving the most beautiful and shiny pair of shoes in the world. Where I didn’t see myself as equal to these shoes, Noah thought they’d been made for me and me alone.

I am now the owner of a pair of red, patent leather, spiked heels. Every time I look at them I am reminded that someone thinks I am a “beautiful-shiny” lady worthy of attention getting shoes. The way Noah sees me is completely different from the rest of the world. My sense of style doesn’t bother him and he doesn’t categorize me because of it. He honestly thinks I am made to wear beautiful shoes, even though most days I wear flip-flops and my hair wadded up in a knot at the nape of my neck. Noah sees in me what I can’t even see.

I am at a point in life when I am trying to “own my shoes” in a lot of ways. Owning who I am means that I am at peace with my profession (or lack thereof at times). It means that I can smile at my wild hair in the rear view mirror and have serenity with my waistline. It means that my accomplishments, intelligence and appearance come second to embracing who I am. And that means knowing that I was made the way I am for a reason. I can only suppose the respectable woman of society might freak out if they had to completely suspend the use of their hair dryers, products and perfumes. Other women might long for a day at the mall to shop and spend their time trying on outfit after outfit. But that is not who I am.

For years I tried to fit that mold so that I could identify with people to whom I ministered and spend time with them. When that didn’t work, I just busied myself with work so I was unavailable during these social outings. Then I just isolated myself altogether and hated myself for not being more “normal”. I’ve had a hard time owning myself.

But at our house, normal isn’t even a setting on our dryer so I fit in here. I don’t care if I use double fabric softener in every load to make our clothes and towels extra soft to avoid sensory meltdowns. I don’t care that routines take precedence over spontaneity – I hate surprises anyway. It’s just fine with me that we need to watch the same movies over and over again. I’m not embarrassed that Noah wears the same outfit to church almost every week because, well, it is his “Sunday outfit” and if we don’t wear it, it might not be a Sunday. I’ve learned to own who we are.

Noah has coached me in many of the unseen mysteries of life, but perhaps his most influential lesson has been “owning” who I am – shoes included.

I love my racy red patent leather spiked high heels. I wear them with my ripped jeans. And I own them.